Article for Nursing Mums

I was asked to write this article for the Nursing Mum's group on MSN:

Nursing my baby with Down syndrome

When you have children you open your life to the unknown, the unexpected and the uncontrollable. This was brought home to me with a bang during the first weeks of my son Alfie's life. After months of worrying about how my older son would cope with a new sibling, his birth brought a realm of much more urgent worries to the fore. How long would he be in intensive care? Why wasn't his bone marrow working? Why did he have bruises all over him? When would he be able to breath on his own? Why was he so floppy? What is a bone marrow for that matter?! After much testing it was determined that he had been exposed to CMV when I was pregnant, he had prenatal jaundice, and Down syndrome. Right. Hard swallow. That's OK. I think.

Breastfeeding was the one thing that I could do. Well, not straight away because Alfie was in the ICU wired up like a christmas tree and I'd just had a c-section, but thanks to two marvellous midwives I was soon on my way. One student midwife, bless her, sat with me with a little syringe and pulled off dew drops of colustrum while I hand expressed during the first night (or was it the second - it's all a blur now). And Lizzie, the independent midwife that we'd hired (in the hope that we'd have a home birth), was incredible. She very gently forced me to express milk with a machine every two hours and eat regularly. Because it'd only been 9 months since I'd stopped nursing my older son, the milk was soon coming in. I was so proud of myself!

It's a bit difficult to get ownership of your child when you can't hold them and other people are helping them to live. But I was determined to breastfeed and to be a mother to my baby as soon as I could. After five days of tube feeding I was allowed to nurse him myself. Alfie's low muscle tone meant that he couldn't hold his head up and found it difficult to latch on but I started by getting him to suck on my milky finger and then gradually managed to replace it with my nipple. All the breastfeeding training I'd had with Noah was invaluable - "tummy to mummy", "nose to nipple", "express milk into his mouth to get him started". I also had to ensure that he was fully supported at all times and didn't come unplugged from all the monitors or get suffocated by my breast (with his low muscle tone he wasn't able to pull himself away so easily). We fumbled about a bit, but after a day or two of trying he'd learned what to do and was able to come of the IV.

Feeding Alfie made everything feel alright. Whatever the medical diagnosis he was my baby and he responded to me and loved to eat! We were just mummy and baby and the rest of everything could just get lost.

During the first few weeks at home I fed Alfie every two hours - and he fed for much longer than my other son had - an average feed was about 40 minutes. With Noah I'd fallen asleep during feeds and co-slept but that wasn't an option with Alfie - he had to be held horizontally, high up across my chest, with his head fully supported - which meant me sitting upright and being quite awake. It was inconvenient but I was so delighted to have him home, and to hold him in my arms, I really didn't mind.

CMV is a virus that can lead to deafness, blindness, brain damage and bone marrow problems. I am certain that breastfeeding helped Alfie to recover from this illness in a remarkably short time. The doctors had to retest him twice because they couldn't believe that his viral load had diminished to 1% in just three weeks.
Having Down syndrome means that Alfie's immune system doesn't work as well as it should. During the first year of his life has been in hospital twice more with a virus and pnuemonia. Both times his abilty to nurse has kept him out of the intensive care unit, calmed him and helped him to recover more quickly.

Other mothers I know have expressed and bottle fed their babies breast milk if they were in hospital for lengthy periods. If your baby has medical complications you need them to have the very best nutrition available. Some mums have found that it's taken weeks to get nursing started, but perserverance and a belief that it really is possible to breastfeed their child have meant that they've won through in the end.

Nursing has also helped Alfie to develop muscles in his mouth that will help him learn to speak, it will add a couple of points on to his IQ - for which I'm sure he'll be grateful - and most importantly, it's helped him to grow into a good sized, gorgeous, jumping and squealing one year old boy. He's still nursing well and I plan to continue for as long as possible - one of the benefits of Ds is that your teeth can come through a lot later so I've not had to worry about getting nipped!

The first few weeks of nursing Alfie showed me just what he was capable of, and taught me to have the highest possible expectations of, and for, my son. It also helped me to just be his mum, and to know that I was doing something that was good for him when otherwise I felt so helpless.

The Laleche league have really good information about feeding your baby if s/he has Down Syndrome: http://www.llli.org/FAQ/down.html
as has this Australian site: http://www.breastfeeding.asn.au/bfinfo/down.html
http://breastfeed.com/resources/articles/benefits.htm

I liked this article too:
http://babiestoday.com/articles/98.php?wcat=26

Alfie has started to crawl forwards!!!!

Three days ago Alfie couldn't go forwards at all and now he can get right across the room. Because he has low muscle tone he isn't able to lift his tummy off the ground so, ingeniously, he has devised his own pull and shove method.

Four generations

Here's Alfie playing with his Great Grannie and Grandpa who were born in 1912 and 1910. When he got bored they poked him with their sticks!

A whole year!!!!

Wow! Alfie is one year old. And such a wriggler. I shouldn't have tried to start writing now because he's sitting on my lap and trying to alternately grab my necklace and pull it off my neck, bite my nose, and bash about on the keyboard.

So, just quickly - he had a 'brain stem' hearing test last week, under general anaesthetic, and was going to have tubes (grommets) fitted at the same time, but the hearing test showed that his hearing is normal!!! I sort of knew that his hearing was OK, but at birth we were told he had a severe hearing loss in his right ear, and at Christmas we were told that he couldn't hear any sound below 15dc. Obviously we were worried, and even more so because the risk of not developing speech is increased if you have both deafness and Down syndrome, but hey - that's one more thing to cross off our list of 'terrible-things-that-happen-if-you-have-an-extra-chromosone'. It also shows that sometimes you need to trust your instinct as a parent and believe what you see rather than what you are told. Interestingly, the normal hearing tests didn't work on Alfie because they are designed for people who have wider ear canals. I wonder if other babies with Ds have had this false negative test result?
Anyway, what a wonderful birthday present (for us - Alfie obviously could hear anyway so having a general anaesthetic probably wasn't the best way for him to celebrate). The consultant decided to be conservative and not fit the tubes, as he didn't have any fluid on his ears, which I'm also pleased about as I'd read mixed reviews on their efficacy.

Also, Alfie has got a tooth. And he's crawling backwards so fast that if you leave the living room for a minute he gets stuck under the sofa. And he has the most gorgeous, melting, joyful smile. We are very, very, very proud of our lovely one year old boy.

Funding Application for an arts project

I've been working on an arts project for teenagers and recently made a government funding application for it. I thought I'd post it here in case it can be of use to anyone else organising a similar project.

1. An arts project for young members of the Nova Scotia Down Syndrome Society: application to the Nova Scotia Government for funding.

2. Provide a short description of the project (1 or 2 sentences)
A group of between 8 and 12 young people (aged 14 to 28) who have Down syndrome, will be
working together with two artists to create artworks about their lives, hopes and dreams for the future.

3. Provide a full project description
Over nine weeks, a group of young people who have Down syndrome will work together to create photographic artworks, primarily at Chocolate Lake Recreation Centre.
The project will be user-led, and during the first session the group will decide upon a name for their club. They will explore and share their hopes and dreams of the future, and create artworks based on these ideas. Participants will have final say about which images are shown, and they will be actively involved in staging and taking the photographs.
The main medium used will be photography as this has immediate results and can look very professional, even if the artist's drawing skills are limited. The group will start with photograms (there is a darkroom attached to the project space), and will then create group tableaus that depict their hopes and dreams. Costume, props, framing devices, overhead projections, slide projections and movement will all be used. The group will then photograph and film these tableaus. Themes such as 'friendship', 'home', 'work' and 'fun' will be explored. The sessions will be paced so that participants are not under pressure to achieve results whilst retaining enthusiasm and momentum throughout.

The finished works will be displayed at an exhibition (possibly at Spring Garden or Sackville Library), and online. The Minister for Community Services, and her staff will be invited to attend the opening and talk with NSDSS members about the ways that Government plans for the future tie in with the plans of our younger members. There will also be a little party to celebrate our members achievements. Copies of the images will be given to participants in a presentation box. This might be awarded at the final show.
A volunteer will also document the project and this information will be added to a blog so that the story of the project and the participants ideas can be shared. Participants who live outside the Halifax area will be able to take part in the project, via two additional arts sessions, in which they will take photographs and interview each other. This work will also be added to the project blog.

This is a pilot project. We hope that the group will continue to make work as a club in the future and that the project will have a legacy above and beyond the exhibition. However, it will be clear from the start that this is a nine week project that will come to an end, so that members are prepared and don't feel let down when it finishes.

The project will be evaluated by informal monitoring and feedback sessions throughout. We will consult with users and parents throughout the project and will look for 'soft signs' that the project is not meeting participant needs such as people missing sessions. We will talk about what members hope to get from the project, and when it finishes, talk to them about what they like and dislike. We may use feedback forms with pictures if appropriate.


4. How does this activity support the Culture Division’s goals for Community Development and Artistic Development?
There is currently very little on offer in terms of cultural and artistic provision for young people who have Down syndrome in Nova Scotia. While the Special Olympics provides activities with a sports focus, there are few projects that teach artistic and creative skills outside school.
This new project will bring together people who may be new to the arts, with professional artists. Its primary aim is to help people develop new relationships whilst engaging in cultural activities.
People who have Down syndrome have certain things in common. It can be fun and reassuring to meet and work together. This project will celebrate the identity and culture that participants share, both as young people, and as people who are sometimes subject to discrimination and have additional challenges in their lives.
The project will encourage more participation in cultural activities by providing high quality arts workshops for people who rarely have the opportunity to experience professional arts practice.
By sharing the outcomes of this project, the participants will be helping to develop the province's cultural diversity. We hope that the finished artworks will be inspiring and thought provoking, and will maybe challenge the general public's perceptions of Down syndrome.
This is a pilot project. If successful, we hope to set up an on-going arts club, that will bring together young people to participate in a series of arts projects. We hope to get more ambitious in the future - maybe designing a billboard, making an online magazine, or creating a short film. It is important that this is an opportunity for participants to experience excellence in terms of artistic provision - we are not trying to mirror activities that could take place at school or home - and the outcomes will reflect this. We want to create high quality artwork with professional materials that will help to show that adults who have Down syndrome should not be treated as children.
The artworks created during this project will be displayed in places that are used by non-art
audiences, thus developing new audiences for the arts.

5. How does this activity help fulfil your organization’s mandate?
"Our mission is to improve lives for persons with Down syndrome and their families through advocacy, education and support."
Specifically, this project will:
- provide support for our younger members
- educate members by teaching artistic and life skills
- improve quality of life for our members
- help to break down barriers and combat stereotypes associated with Down syndrome
- inform decision makers about the needs and aspirations of our members, and we hope, help to influence policy so that independence and integration into the wider community are seen as
priorities.

6. What knowledge and experience do members of your organization have that will be required to carry out your proposed activity? (Organizations conducting workshops must provide a résumé or pertinent background of the instructor or resource person.)
Two professional artists will be leading this project:
Renée Forestall is a forensic artist who has taught at NSCAD. Her 16 year old daughter, Marie, has Down syndrome (and has helped to shape this project).
Before moving to Halifax last year, Alice Evans worked as an arts educator at the Serpentine Gallery (www.serpentinegallery.org.uk), for the Arts Council of England, and for the past eight years was Director of Westminster Arts (www.cwac.org.uk), responsible for the distribution of community arts funding on behalf of local government in Westminster, London, UK. She trained as an artist and volunteered as an arts facilitator for an adult who had intellectual disabilities from 1994 to 2004. Her youngest son, Alfie, has Down syndrome.
Additional support:
Kerri-Ann Ryan is a professional dancer who has taught people who have Down syndrome.
Other volunteers on this project will be family members and friends who have a personal interest in being involved.

7. If your activity is successful, what outcomes or benefits will it achieve?
The main aims of the project are to:
- combat isolation for young people who have Down syndrome
- provide a creative outlet for young people
- develop artistic skills and knowledge
- develop communication through art and conversation
- communicate to the decision makers who influence participants' lives
- provide a model of working that can be developed in the future
- build self confidence for participants
- develop life skills and improve quality of life
- raise awareness about Down syndrome in the wider community
- create a high quality art exhibition.

8. What relationships will your organization develop or strengthen within your community, or within your cultural sector, in carrying out this activity?
We will develop relationships between:
- the young people who participate in the project
- the NSDSS and its members
- the participants and the professionals who lead the workshops
- people who have Down syndrome and the general public
- the NSDSS and local government policy makers.

We've been away for a month...

...back to England. Wow! It's been amazing to see our lovely family and friends but, hey a month is a long time to be staying at other people's houses and we are totally exhausted. In fact, Mat, Alfie and myself all have strep throat and tonsilitis so we've been lying around groaning - but at least in our own beds. Poor Noah found it especially hard staying at so many different homes and is only just getting back to his normal chatty-quirky-silly self. Anyway, after a week in bed I have struggled down the stairs to post a few photos of the boys with their cousins Ben and Tom, and Louie (with my sister Kate). There's been so much going on in my head I don't know where to start back with my blog.

Well, I'll start with a worry - poor Alfie is ill AGAIN! He has his tubes appointment scheduled for next Thursday so please can you send him some wellness. If we have to reschedule his appointment this will be the 5th time it's been changed due to ill health in the last six months. I wouldn't worry so much but his hearing is very up and down and I think they might not believe me if he's ill AGAIN!
Hey, on the good side though - he is crawling backwards! A month ago I noticed that if I was in the room with him he'd just sit smiling at me, but whenever I left (even for just a moment) he'd have moved ages across the room. He was using a clever rolling technique but has graduated to a consistent backwards crawl now - bless him, he keeps getting stuck under the sofa! I'm going to make some grippy knee pads because he's not getting a proper purchase on these shiny wooden floors and his legs are prone to splaying outwards - I think something with shammy leather - any ideas?
He's also started babbling which is a really good sign for talking - I was thinking it might never come. I try and get him to repeat the noises that I make (as the speech therapist showed me) - he never actually does copy me but loves it when I make "ba ba ba" noises and he tries to look right inside my mouth - with his eye right up to my lips if he can - to see how I do it - SO SWEET!
He and Noah are practising for the Canadian Brothers Baby Wrestling Championships. Noah is so adorable with his bro and lets him grab him and pull his hair for hours. Bless.

Anyway, Alfie is 1 year old next week!
That is bringing up lots of stuff about this funny old year and what we were doing this time in 2006. Blooming heck - it's been one of the best and worst years of my life! Thank goodness for my lovely boys. I'm so proud of Alfie and I can't really believe he's made it to one year old already. He really makes our family whole and I can't really put my emotions about this into words - I just know that with him and Mat and Noah in my life, the world is a million times richer for me than I could have ever hoped.

Normal Syndrome

When Alfie was born we were so overwhelmed by all the information about his future that we were given - where he might go to school, what his health might be like, and even what his personality might be! I found it very hard to deal with until Matthew wisely pointed out that if we'd been given comparable information when Noah was born we would have been in shock for weeks. Well, my lovely friend Karen has sent me this clipping from the UK Down's Syndrome Association Newsletter (March 2007). It made me laugh out loud:

"I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your foetus is what we call...Normal.
Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, buy you should be aware of what this is likely to mean.

If your foetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to heatlh and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damge themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.
But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.

Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure."

By Anon. (In the printed version there's a warning at the top to say that this is intended to make a serious point in an interesting way and is not meant to offend anyone, except possibly a few doctors).

Happy Mother's Day Felecia!

I met Felecia last Sunday at the NSDSS meeting. She's expecting her second son this week and she knows he's got Down syndrome so she's been finding out all about it. She's got such a positive attitude so I know she'll be fine, but if you are reading this, can you send her a big lovely good luck message through the air to Nova Scotia.

Happy Mother's Day Felecia at this very special time, and good luck with your lovely boys. Here are some pictures of my two, when Alfie was just a few weeks old.

NSDSS Response to the Globe and Mail

I just wanted to share with you the extremely powerful and well written media release by Renate Lindeman, who started up the Nova Scotia Down Syndrome Society, in response to the Globe and Mail's article entitled "Doomed from birth to death":

Down syndrome; Doomed by the Media

The signing of the UN Convention for the rights of people with disabilities by Canada on March 31st, 2007 marked another milestone in advancing the rights of people with disabilities. It appears we have come a long way. People with Down syndrome are included in their schools and communities, they get married, enjoy equal opportunity employment. But beneath all this outward appearance of progress a different message can be heard.
Today, in Canada, it is not a heartening time to have Down syndrome.

‘Doomed from birth to death’ was the appalling title of an article published by the Globe and Mail on May 5th, 2007. ‘….Born with Down syndrome, she is dying slowly from Alzheimer’s disease...’ The reporter then proceeds to report sad fact after sad fact, fragments of lives of people with Down syndrome after the onset of Alzheimer’s. What about all the years before Alzheimer’s? What about the thousands of Canadians with Down syndrome leading rich lives, holding meaningful employment and having loving relationships? Finally, what about the people with Down syndrome that never develop Alzheimer’s? Seems to me there is plenty to celebrate between birth and death.

It is one thing to educate people on the tragic link between Down syndrome and Alzheimer’s, but the stream of negative information leaves readers in a state of despair. Important, hopeful facts about treatments that slow down the progress of Alzheimer’s and make it more manageable are ignored. There is no mention of the promising research conducted right here in Canada by Dr. Weaver at Dalhousie University in Halifax (see article ‘Anniversary of Hope’). Nor does it mention the trial conducted by the Down Syndrome Research Foundation in British Columbia on the effects of vitamin E and prevention/delay of early onset of Alzheimer’s. Instead the reporter seems bent on painting a bleak picture, with a headline that is sure to cause sensation and sell many copies. It is unthinkable any other group in Canada could have been singled out as being ‘doomed from the womb’ without causing a riot.

‘… The culprit appears to be the extra chromosome that shaped her brain and body in the womb…’.
I question if, a person with Down syndrome develops Alzheimer’s at age 40, this should be viewed as inevitably ‘shaped in the womb’, or rather as something that develops throughout the lifespan and can be treated. Evidence suggests the development of certain diseases (like Alzheimer’s) in people with Down syndrome is the result of a changed biochemistry due to the presence of the extra chromosome. ‘…Most people with Down syndrome have an extra copy (of the 21st chromosome), and it carries the instructions for a protein believed to play an important role in Alzheimer’s…’


Further research into the effects of this protein might mean that one day it is possible to treat, delay or even prevent the early onset of Alzheimer’s (and/or other diseases).

Important and promising research in this and other fields, aimed at improving lives of people with Down syndrome, is being conducted around the world by few dedicated scientists. (Stanford University, Down Syndrome Research Foundations in Canada and United Kingdom, Nutri-Chem’s Kent MacLeod etc.) Unfortunately research has been largely ignored by the medical society. Is this because it is believed that Down syndrome will soon no longer be prevalent? Has the ability to identify Down syndrome in pregnancy, so relatively easy and cheap, shifted the whole focus to prevention (by aborting) rather than treating the complications of this syndrome? Has society really decided that lives with Down syndrome are not worth living or are these opinions shoved down our throats by ignorant or biased reporters and editors?

After singling out this group of people as ‘doomed’ on the front page of the Globe and Mail, the newspaper then provided a public platform (online comments) on their website for some very extreme ideas.
Much of the language used in the comments should not be reprinted and it suffices to say that some very extreme ideas were being voiced. People with Down syndrome were being referred to as patients, dogs and stuffed animals.
The ‘value’ of people with Down syndrome was being questioned over and over as they were accused of being unproductive and a drain on resources. ‘Value’ for society was only measured in terms of the ability to make money, and no value was placed on care, respect, acceptance or love. If society views people with Down syndrome as a ‘burden’ in these times of abundance; what will happen if we face an economical recession? We cannot allow people with Down syndrome to be the scapegoat.

Medical research advances at a dazzling speed now that genes can be identified responsible for certain conditions. The many new ethical and societal dilemmas’ this creates are not being properly addressed.

Lives and opinions have changed forever due to publication of this article and people are left dealing with the damaging effects long after this reporter’s ‘day of front page fame’ has passed. Families who fought for decades to achieve inclusion and equal rights for their children now have to battle negative attitudes once again. Families might face more barriers in getting the supports for their children they need. Prospective parents whose decision may be negatively influenced when faced with a pre-natal screening that is positive for Down syndrome. A woman may have to live the rest of her adult live in a group home, because her brother and sister-in-law are reconsidering their decision to offer their home after reading the article.


We cannot allow this vulnerable group of people, some of whom have no verbal skills, to be condemned on the front page of a leading National newspaper. This is an example of negative, biased and discriminatory journalism. For some excellent reporting on Down syndrome, objective and balanced, I would like to recommend reading the article published in the New York Times of May 9, 2007.

I am the mother of two beautiful children with Down syndrome, who are definitely not doomed, and the president of the Nova Scotia Down Syndrome Society. I can be contacted via www.novascotiadownsyndromesociety.

Renate Lindeman
Mineville, Nova Scotia

I've been having a real up and down week. Lots of Down syndrome stuff...some things that need a bit of bravery and others that warm my soul. Also, we are moving house so there are boxes everywhere - I'm trying to pack up my feelings a bit too. In particular, it's been a bit hard this week seeing lots of babies who don't have Down syndrome. It's a bit odd and I have to do a little swallow when I see a three month old so easily lift his tummy off the ground, - I'd be thrilled if Alfie could do that. Sometimes it just hits me that Alfie's got to put so much work in to accomplish the little things. Not that he minds. He's so delighted to be able to reach his toys now, and put his arms up for a cuddle, grab the spoon for his supper, and pull a nice big handful of Noah's hair.

Also, I keep getting a little shock when I see how long typical babies legs are! I think "what funny leg extensions they've got". So quickly your idea of 'normal' changes.

There's an article in the Globe and Mail today about Down syndrome and Alzheimers. Don't bother reading it, it's badly written, melodramatic and patronising - the title is 'Doomed from birth to death'. I won't even link to it because it will just take up time you could better spend humming tunes or staring blankly into the fridge. Instead I'm going to post a few of the comments that people have added at the end...

"Renate lindeman from Mineville, Canada writes: I take great offence in the title "Doomed from Birth..." As the mother of two beautiful children with Down syndrome, I know the challenges our family faces; medical, developmental and societal. Some challenges are faced and can be changed by working hard, some challenges cannot be changed and we need to accept. Alzheimer is a devastating disease but medical science is progressing fast and is close to finding answers. As a society we can make many positive changes by not seeing people with Down syndrome as 'being doomed' We are all destined to die; but there is so much to celebrate between birth and death. Being is the answer."

"Kate Chase from Vancouver, Canada writes: As a speech language pathologist who works with many wonderful children with Down syndrome and their families, I find the headline of this article to be completely inappropriate.
There are many interesting points to this story, including the full lives lead by most individuals with Down syndrome, the scientifically fascinating link between DS and Alzheimers, and the need for appropriate care for individuals with DS in their later years. None of these issues require a headline including the word "doomed".
As so many other readers have commented, we will all die at some point - children with DS are no more doomed from birth than those who might have a predisposition to Parkinsons, cancer, or any other disease. Lives may be shortened for any number of reasons, but they are still worth living and far from "doomed"."

"Gary Twyne from Lower Sackville, Canada writes: I am the proud father of two girls. Both of them are beautiful, healthy, vibrant, inspiring, loving and full of hugs - I couldn't picture my life without them. Both of my daughters have Down Syndrome. When my first daughter was born I had a lot to learn about being a dad and about Down Syndrome. My wife was 27 when Claire was born, hardly old, and our stated odds of having a child with Down Syndrome was about 1 in 1000 for our age category. Upon seeing a genetics counselor about our options for a second child we realized that there were very few options, have your child or abort your child! An amnio test would simply let us know if the baby was going to have DS and then we could make a decision based on that. An amnio test has a risk of aborting the fetus on its own (1 in ~300) and the test is hardly reliable (in my opinion), I was appalled to learn just how high the percentage of false positives and false negatives are. After two years we had a second child and she too ended up having DS. Medical science is learning new things to better our lives everyday, and it is obvious to me that this article shows more gains can be made by studying adults with Trisomy 21 & Alzheimer's or any other disease for that matter. Without a doubt these studies will provide further invaluable information in the hopes of creating treatments or cures for all of mankind. Doomed because of our genetics. The hair on my arms stand on end when I think of genetic selection; where does it end? Who picks the genes that should continue? Do we hold the wisdom to determine what genes the world can live without? Should you not be born or live life because of heart disease? Cancer? Addictions? Where would it end? How many people in this world are truely genetically 'normal'? In North America 9 out of every 10 couples abort DS babies, doomed before their lives could even begin. Claire and Elise bring me hope happiness and joy. They are blessings from birth!"

Here's my comment (please note that I'm feeling especially grumpy today): "I found this article, especially the title, really hurtful and upsetting. My nine month old son has Down syndrome, and, yes, I am aware that he has an increased chance of getting Alzheimer's disease, but my father died of a rare heart disease and I am at increased risk of contracting that... other people may be predisposed to breast cancer, or depression, etc, etc. Disease and illness are part of life but we are not 'doomed'! I think that this article is sloppy and badly written. The journalist has played on emotive language for effect, and I find it particularly patronising and insulting. As well as the title, phrases such as 'wet rubbery kisses' are prurient and undignified descriptions of adults who are suffering from Alzheimer's. My grandmother also has this disease and if she has been described in these terms I would be shocked - is it OK because the subject has Down syndrome?

As I put my young son to bed this evening I thought once again about the phrase 'doomed from birth'. It sobered me for a moment but then he gave me such a joyful grin I remembered how lucky I am to have him in my life. Please don't patronise him, or me, with any more pitiful articles."

On a more 'up' note:

I'm very excited about a new project. Four of us from the Nova Scotia Down Syndrome Society met up this week to plan a photography project for young people (well, actually it was five of us but Alfie didn't really contribute anything). We're planning an eight week project for a group of teenagers who have Ds. Together we're going to make artworks about dreams and futures, and hopefully we'll be able to develop the group into a permanent club. I'll write more as it comes together. We've already got a great room to meet in, and some money raised throught the NSDSS, a plan, and eight young people who want to take part...I'm hoping to raise a bit more money and we plan to start in September. It just shows how easily you can make things happen when you work together.

Denial

I met some gorgeous children on Monday. Two kids who have Down syndrome who go to Alfie's playgroup at the Progress Centre. I was planning to leave the kids with Mat and go shopping but these cuties were so gorgeous, with their big eyes and smiles, that I had to stay. Also it was really nice to meet their mums.

Anyway, we got to chatting and one of the subjects that came up was 'denial'. How it is difficult when your baby is born to take on all the information that's given to you. And some subjects are just too much. One of the mum's said she couldn't look at the Down Syndrome Society website, or join it, it was just too much to take on board. I found the same thing with anything medical. At first I threw away all the literature I was given in the hospital about health issues. Often I find myself saying 'la la la' in my head when the doctor's telling me things. I'm finding my own way through now and I've read up on things one at a time, but I was just browsing the web when I came across the Down Syndrome Research Foundation. It looks really interesting but my 'denial' sensor has come up. I've decided to ignore the site and write this post instead. Now I might watch the Trailer Park Boys. Is it 'denial' or is it 'organisation of complex issues into a format which is compatible with my emotional well being'?

Here's a picture of Noah when he was one, eating a melon.

Spring at Peggy's Cove

Alfie and his team

Here are some of the staff who were so wonderful when we had to stay in hospital.
I took this on the day we found out we could go home.

Three pictures of Alfie

To supplement or not supplement...

When Alfie was very little someone sent me a magazine article that really got me mad. It said that Down syndrome was caused by a lack of folic acid in utero, and that if you took certain supplements your child would be 'normal'. 'Normal' looking and 'normal' thinking. That's a short summary but I was furious. Firstly, I took folic acid religiously when I was conceiving and pregnant, and secondly, why would I want my child to be 'normal'! I love him and accept him wholly for who and what he is. He is beautiful and couldn't be more so, and I'm not going to try and 'cure him' because he's got an intellectual disability. Thirdly, I thought the whole thing was written to try and sell a product and prey on vulnerable people.

Then Alfie was diagnosed with fluid on his ears and developed pneumonia. I took him to his pediatrician who told me that Alfie might have an impaired immune system due to the extra chromosone. Again, I was furious. "He's just ill - why does everything have to be because of Down syndrome?". But, after spending 15 nights in hospital when most kids are out in 3 or 4 days, I realised that maybe Ds was playing a part here. In order to try and do the best I could for my child I took him to a naturopath who prescribed a multi-vitamin called Nutrivene-D, vitamin D and fish oil. I bought the Nutrivene-D (at much expense) and started to give it to Alfie on a daily basis.

So, Alfie's immune system doesn't seem to be doing its job properly. But can these supplements really help with this? Am I being ripped off with the Nutrivene-D? Is there any scientific evidence for any of this? Is there any evidence at all?

Well, my lovely friend Karen is staying with us from England, and she just happens to be a librarian for one of London's major teaching hospitals. This means she has access to all the major clinical trials, and reviews relating to them - and what's more, she understands them! Bless her, she's spent ages this evening downloading all the clinical trials that relate to Down syndrome and supplements.

Copyright on some of these findings means that I can't just upload all the results and make them available for free so I'm going to summarise the information here. It might be a bit long winded, but I hope you find it useful. Please bear in mind that I have abbreviated the information to make it understandable - and I've tried to use the clinical trials to answer my own questions. Although I have tried to be as objective as possible, I am not a scientist and I might have got some things wrong.

The searches Karen used were via pub-med , and The Cochrane Library. We read the abstracts and conclusions for around 30 studies, but only 8 were really relevant. You can do your own searches on pub-med, and many papers are available for free.

The first thing that we noticed is that there were lots of trials relating to Ds and supplements pre-1985, and then they petered out. Is this because money was redirected towards pre-natal scanning at this point? It is really striking that there are so few trials relating to such a major health problem. There are more recently, but these are generally relating to ailments that are also seen in the general population such as Alzhiemers. Anyway, here are my questions:

Can dietary supplements reduce the likelihood that Alfie will develop dementia at an early age?
According to the research paper Can cognitive deterioration associated with Down syndrome be reduced? (Thiel & Fowkes, 2004), individuals with Down syndrome are "much more likely to have cognitive deterioration and develop dementia at an earlier age than individuals without Down syndrome". "This paper suggests that essential nutrients such as folate, vitamin B6, vitamin C, vitamin E, selenium, and zinc, as well as a-lipoic acid and carnosine may possibly be partially preventive. Acetyl-L-carnitine, aminoguanidine, cysteine, and N-acetylcysteine are also discussed, but have possible safety concerns for this population. This paper hypothesizes that nutritional factors begun prenatally, in early infancy, or later may prevent or delay the onset of dementia in the Down syndrome population."
This paper is very complicated and there's lots to read, but an 'Alice summary' of it is yes, there is evidence that some supplements might be effective in delaying dementia. And according to this paper, folic acid, vitamin B6, vitamin E, selenium, and zinc, a-lipoic acid and carnosine won't do any harm.
(From "Can cognitive deterioration associated with Down syndrome be reduced?" R. Thiel*, S.W. Fowkes, Center for Natural Health Research, Down Syndrome-Epilepsy Foundation, 1248 E. Grand Avenue, Suite A, Arroyo Grande, CA 93420, USA, 24 August 2004). You can read the abstract for this article, or buy the full text for $30 US at www.sciencedirect.com

As a footnote to this, I also looked up herbal treatments for Alzheimers and found a systematic review that found that certain herbs, including ginkgo biloba, are useful for cognitive impairment of Alzheimers. "These herbs and formulations have demonstrated good therapeutic effectiveness".
(You can download this review for free from pubmed. Search for: Evid Based Complement Alternat Med. 2006 Dec;3(4):441-5. Epub 2006 Oct 23. The use of herbal medicine in Alzheimer's disease-a systematic review. Dos Santos-Neto LL, de Vilhena Toledo MA, Medeiros-Souza P, de Souza GA.)

Can dietary supplements make Alfie cleverer?
There has been a thorough review of all the clinical trials that test whether cognitive development can be improved with dietary supplements. Only eleven trials were deemed rigorous enough to be included in the review and "overall, the quality of these trials was poor with few subjects and generally inadequate allocation concealment of the treatments given." None of the trials could record any effect on cognitive development from taking vitamin and mineral supplements. The review could find "no positive evidence that any combination of drugs, vitamins and minerals enhance either cognitive function or psychomotor development in people with Down syndrome. However, because of the small number of subjects involved and the overall unsatisfactory quality of the trials, an effect cannot be excluded at this point."
In short, the trials are inconclusive and there is no proof at present.
(MICHAEL S SALMAN Department of Paediatric Neurosciences, King’s College Hospital, London, UK, doi: 10.1053/ejpn.2002.0596 European Journal of Paediatric Neurology 2002; 6: 213–219).

However, I have read a first hand account by a parent who says that she has noticed a cognitive change in her son when he takes ginko biloba, so personally I wouldn't rule this out completely. I just think there isn't enough research to really know and I would be suspicious of any drug companies trying to sell supplements on this premise.

Can dietary supplements effectively boost Alfie's immune system?
According to Nutritional supplementation in Down syndrome: theoretical considerations and current status (Ani, Grantham-McGregor & Muller, 2000) "There have been seven uncontrolled zinc trials with pre and post-treatment measurements with a total of 168 individuals with DS aged 2 to 22 years. All the studies consistently reported mainly laboratory evidence for beneficial effects of zinc supplementation on the immune function of individuals with DS." But there haven't yet been wide and thorough tests so the evidence is not yet conclusive: "In summary, although there are encouraging results from uncontrolled studies and in vitro experiments suggesting that zinc supplementation may enhance immunity and reduce malignant potential in individuals with DS, there is no rigorous or consistent evidence from clinical trials to show that this is the case." In my opinion, that's a yes, possibly, for zinc.

This paper also discusses 'oxidative stress' (I don't know what that is), and its effects on people with Down syndrome. It suggests that 'oxidative stress' may be responsible for increased 'malignancy' (I don't want to know what that is!); mental development, and premature aging, and that Vitamin E might help to combat this. "

"It is possible that supplementing individuals with DS with exogenous antioxidants [such as Vitamin E] may offer similar protection to their cerebral status. This is supported by the protective effect of antioxidants on DS neurons in culture, referred to earlier. A randomised controlled trial of vitamin E in Alzheimer’s disease found significant beneficial effects." So, yes, Vitamin E is likely to be beneficial.

According to this paper, trials that showed benefits from selenium, mega vitamins and mineral supplements, Vitamin A, Vitamin B6, and Targeted Nutritional Intervention (TNI) supplementation, were all flawed. So, no, there is currently no evidence to suggest that these are effective in combating infections (although they might be useful in treating Alzheimers - as discussed earlier).

An interesting note on TNI supplements (which I think includes Nutrivene-D):
"We found that a typical TNI preparation contains 1000 mg of vitamin C which may be unsafe in children, given that a daily intake of 500 mg of vitamin C has been shown to have pro-oxidant effects in adults." So, that's a no, it might not be good for children with Ds to take large doses of vitamin C.
Nutritional supplementation in Down syndrome: theoretical considerations and current status. Ani C, Grantham-McGregor S, Muller D. Dev Med Child Neurol. 2000 Mar;42(3):207-13. Centre for International Child Health, Institute of Child Health, University College London, UK. cani@ich.ucl.ac.ukPMID: 10755461 [PubMed - indexed for MEDLINE]

What should I be giving Alfie?
Well, while Alfie's brain is developing, it seems sensible to take advantage of the possible effects of these supplements especially as there is clear indication that some vitamins are beneficial for specific ailments. If I wait until clinical trials have been completed, Alfie might be too old for anything to be beneficial and I would rather pay for vitamins now, than be sorry later. There is a trial taking place in the UK at the moment which should help to answer some of the questions that are currently up in the air. For this trial children aged 1 or over were given the following nutrients:
Nutrient / Dose
Vitamin A (beta carotene) / 1.2 mg
Vitamin C / 65 mg
Vitamin E / 130 mg
Zinc / 6.5 mg
Selenium / 13 micrograms
Folinic Acid / 130 micrograms
I'm assuming that they thought this combination would have some effect and is unlikely to do harm, so I might do the same, but add Ginko Biloba aswell. And maybe vitamin B6, and carnosine (?). I'll discuss it with our pediatrician and naturopath. I'll also check the amount of Vitamin C in the Nutrivene-D dose, and if it's 65 mg or under, I might continue using that - certainly until I finish the pack! Also, the Nova Scotia Down Syndrome Society has organised a one day conference on health which will look at supplements, so I'll discuss it with people then and update this post afterwards.
I've got some more information to read, including a paper about fluid on the ear, so be warned, I might continue this dense and heavy thread in future posts!

Yuck! I've had enough of learning curves.

We are home and for the first night in weeks I can't sleep. There are no strangers coming into my room, no bleeps, no coughs, no panic jumps of awakeness, no soggy hospital cots to sleep in, no babies crying inconsolably in the next room, no electronic hums, and I am AWAKE!!! Lying in bed thinking about my blog of all things! Well, I have taken a bag of carrots from the fridge and I'm munching and typing and chomping and hopefully I'll get it all out in twenty minutes, fall into a beautifully restful slumber and be alert and astute in the morning.
(hmmm - fat chance).

But the important thing is that we are home after 15 nights. Alfie is much much better and we are all on the mend. Thank pants for that. I've learned so much recently that small bits of information are falling out of my ears.

Resilience. That's the most useful thing I've learned. We are resilient and we can cope with more than I imagined. It helps that everyone has been so kind and supportive - I'm in the kind of mood where I can be fine and strong and resilient when things are going well, but if someone takes my place in the queue I'm likely to throw my Tim Bits at them.

I've also learned that Alfie has an impaired immune system. And what this actually means is that it's easier for him to get very ill, and harder to get well. My friend tells me that she's got a really good naturopath and has helped her children (who have Ds) to stay well for a good while now. I shall wring her for information and share it with you too.

More stuff I have learned...

• Don't hang out with sick kids if you know they are sick
• Get a flu shot
• Don't spray everything with anti-viral antiseptic spray because it actually impairs children's immune systems - lemon balm in a spray is better - as is a flu shot.
• Give Alfie and Noah vitamin D
• Wash your hands more
• Get a flu shot! (Actually, Noah did have a flu shot and he still got ill - but I think it might have stopped Alfie from being so very precariously sick).
  
• Chest physio is extremely effective for Alfie and if he gets pneumonia again I should make sure he gets it straight away - it's more important if you have Ds than for typical children.
  
• Ear plugs are an essential item in hospital
• Anti-biotics can cause runny stools which can cause weight loss, but pro-biotics from the health food store change this.
  
• Hot steamy bathrooms help to runnify your insides and get rid of pneumonia. So do saline drops in your nose.
  
• Lots of movement and activity is good too.
• Nursing relaxes Alfie and opens up his airways (it also meant he didn't have to have his food via IV)
• "Cough in the Trough, Sneeze on your Sleeve" - cough in the crease in your elbow and sneeze on your sleeve rather than on your hands so you don't spread your germs everywhere.
• It pays to be interested and alert and take an active role in your child's medical care.
• The nurses and doctors and students and therapists and physios and cleaners at the IWK hospital are very, very, very, good
  
• It is good to be in a hospital where they aren't always short staffed
  
• Going out in the cold doesn't make you ill as long as you are dressed up warmly enough.
• Canadians don't put kisses on the end of their emails (x)
• One of the hardest things has been helping Noah through this difficult time. The Child Life department at the hospital were incredibly useful. They brought toy medical kits and doctor and nurse puppets and just let him play. He worked through lots of his fears about Alfie and doctors and calmed down a lot. I'm going to do some more playing with him and Alfie now that we are home because he really isn't himself at the moment. Very tearful and upset. It's all so confusing having your mummy and brother away for so long when you are only three. And then having them back. I wrote a little picture book for him in hospital about Alfie and what was going on. I think I might do another one now for coming home.

• If you eat too many carrots your tongue goes a bit numb. I'm off to bed. Wish me luck. x
  

Blooming Heck: We're in hospital!

Poor little Alfie has pneumonia and influenza and we've been in hospital for the last 10 days - feels like an eternity! He's getting much better now but it was a bit dicey for a while. We've been living as if in a dream, just watching time pass on the clock but not really believing it. Day, bleep, night, bleep bleep, doctors rounds, bleep bleep bleep. This sort of thing is very hard on your heart. I need a sigh machine that can suck all my sighs out and replace them with something light and fluffy - giggles maybe.

Alfie's still on oxygen but they are finally able to reduce the amount and bless him, he's starting to sit up on his own. He's so smiley about it all - the rest of us are shattered though. His breathing was further complicated by sleep apnea, - I think his tongue is a bit big for his mouth and when he sleeps on his back it blocks his airway. Bleep bleep bleep bleep. His sats monitor is going off all the time. And I keep waking to find a room full of nurses and doctors. Bleep. With Alfie grinning at their funny masks. Bleep bleep.

And we bought a house last week too! I've only seen it once but it seemed fine and we couldn't get too worried about it with everything else that was going on. I think that was the most relaxed real estate purchase ever made. "Is it standing upright? Nice colour? OK I'm sure it will be fine".

We might be in here for another week or so, but I'm crossing my fingers it'll only be a couple of days. This hospital (IWK Children's Hospital) is great - all the staff have been exceptional - professional, friendly, on the case, interested, energetic, and kind. And talking of exceptional - my friend Susan - who has FIVE children of her own, including two who have special needs, volunteered to come and stay the night so I could have some time off!!!! How lovely is that! I am so touched. She's coming this evening for a few hours and I can't wait to get home to cook and put Noah to bed, and just chill out with Mat for a bit.

It's strange having the same light-hearted conversations over and over again ("what brought you to Canada?" "oh you've got some accent") with all the medical staff, and then bizarrely chirpy conversations with parents who are going through the most difficult times of their lives. ("how long have you been here?": "oh about three months" "have you got any other children?": "none that are alive") The contrast is too great sometimes, especially when you don't see anyone you know all day.

Alfie and Noah's Nan and Grandad are coming tomorrow! Yeh! I am so excited! Last time we saw them Alfie had nasal prongs to help him breath and was in hospital, and the time before that he was in intensive care. What bad luck that it's happened again. Well, at least things are on the up. I'll write more when we get home. Bleep bleep bleep bleep bleep.

Our boys are growing up so fast!

Wow! Looking at these pictures it really strikes me how quickly Noah and Alfie are changing! Alfie couldn't really hold his head up two months ago - and now look at him! And Noah is getting ready to hit the road as a Canadian cowboy. He's been talking with a pseudo-Canadian accent all day today "I ceen't fix it" "I'll pud it in my beeg" mixed in with English "mummy"'s. He's not got it quite right yet, probably because he's learnt it from Bob the Builder (USA version), Elmo, and various 3 year olds. Bless. Alfie is eight months old next month. And Noah is three and a quarter.

Alfie has some carrot

Hooray! I have finally found the camera cable so I can download the pictures that have been stacking up since Christmas. Here is Alfie having his first solid food.

Working with Doctors

My friend has been having a hard time because her child, who has Down Syndrome, has not been well. Her behaviour changed significantly, she stopped communicating, and was less coherent. This obviously has caused a great deal of worry for her parents - further compounded by the fact that the doctors, for over a year, could not see past the diagnosis of Down Syndrome. Even though her social skills started to decline, the doctors were still saying that this was 'normal' for children with DS (social skills are usually very strong in children who have DS). After a long struggle, and by engaging a naturopathic doctor, they have managed to find a treatment that is finally benefiting their daughter - a combination of anti-fungal and pro-biotic medicines.

One of the things that strikes me is that ensuring the best medical treatment for your children can be difficult at the best of times, but when they have DS it's a minefield. Occasionally doctors fail to see symptoms that would be obvious to them in typical children. Sometimes the Down Syndrome diagnosis can throw them off their game. This is just a little example, but when Alfie was a month old he had an eye infection and the doctor at the hospital wrote the diagnosis 'Down Syndrome' on his prescription - as if a short course of anti-biotics was going to treat his extra chromosone! She was so caught up with the Trisomy 21 that she failed to accurately fill out a basic form.

Another issue is communication - a friend of mine who had an intellectual disability was treated in hospital for a bowel cancer operation, and one day when I was visiting, a doctor asked him if he had "passed wind". There was no way that David would understand such a euphemistic question - but when he answered 'yes' the doctor ticked a box on his form. I had to point out that he would say "yes" to pretty much any question he didn't understand - but it didn't make much difference. Unfortunately, David's operation had gone wrong and it wasn't picked up until it was too late.

So my questions are these:
How do you persuade a doctor that it isn't 'just Down Syndrome' that's the problem?
How do you come across as a knowledgable adult rather than an over-anxious parent?
How can we teach medical practitioners to communicate effectively with our children as they grow to adulthood?

I don't have any firm answers yet, but these are my initial ideas:
If you film your child regularly, you can show medics how you expect him to behave when he is healthy and well.
If you type up notes and print copies out for doctors they seem to be able to understand better than if you tell them things.
If you keep a log when illness occurs (again, typed), you can accurately answer questions about dates and times, etc.
Take a notepad and pen along to doctors appointments and obviously write down what they say. Then use the long words again when you are talking to them.
Tell your doctor if s/he uses language that offends, or does not treat you as s/he should. In my experience doctors appreciate it if you talk to them first about their behaviour before reporting above their heads. If all else fails, don't be afraid to make a complaint if you feel it will improve circumstances for other patients who have intellectual disabilities.
Tell your doctor if s/he does something right. People do their jobs better when they get positive feedback.
We need to get involved with the training of new doctors and encourage placements and interviews with medical staff so they get to know children who have DS at the very beginning of their careers.

Do you have any more tips or ideas?
I've found this excellent information produced by the UK Down Syndrome Association in conjunction with St Georges Hospital. It includes tips for diagnosing illness with people who have learning disabilities. Is there anything similar in the USA or Canada?

I also need to say how fantastic all the medical staff at the Royal Surrey Hospital were when Alfie was born. Really truly wonderful. So professional and supportive. They talked about 'possibilities' rather than 'disabilities' and gently pointed us in the right direction when things were difficult. It meant so much to us to have professionals who really knew their stuff, working with us to help our little baby. The intensive care staff at the special baby care unit even suggested that Mat and I go out for a meal while they baby-sat! I am genuinely grateful for the incredible support we've received. It's made all the difference to Matthew and myself.