Nursing my baby with Down Syndrome

One thing has been nagging at me a bit - it's some advice I read in hospital in the abbreviated leaflet from the Down's Syndrome Association in the UK: "You may have chosen to bottle-feed your baby for whatever reason and many babies with Down’s syndrome find it easier to feed from the bottle. It will not harm your baby to have formula milk. The important thing is that you and your baby should be as contented as possible!". I think that this is poor advice (not the bit about being contented though!). The information on their website is excellent and includes lots of tips for feeding and being patient with it, but that wasn't what I read during the first few days when I was struggling to get started. The benefits of breastfeeding are all the more important when your baby has special needs, and women don't get enough support and encouragement to breastfeed adequately at the best of times, let alone when their baby might need some extra support. It's really hard to learn a new skill when you've got a new born baby and there's a whirlwind of advice and new information being thrown at you, and it would be much easier to not breastfeed during these first few days - but in the long run it could make you and your baby so much happier if you are able to provide the benefits of natural milk.

I am so glad that I had a midwife who was so supportive and that I had breastfed Noah beforehand so I was confident that it would be possible. Noah was very hard to get started because he kept sucking his lips instead of my nipple - I had to spend days trying before we got the hang of it, so I wasn't so thrown by Alfie's initial splutteriness and need for physical support.

On top of Down Syndrome, Alfie had a poorly bone marrow and deafness in one ear due to a virus called CMV (cytomegalovirus http://en.wikipedia.org/wiki/Cytomegalovirus#Pregnancy), jaundice, and some other illness which hospitalised him for another week. Altogether he had so many tests and pricks and pokes, and we were so worried, at times the one thing that kept me going was that I had this lovely little baby who was suckling just like any other. It helped me to just be his mum, and know that I was doing something that was good for him when otherwise we felt so helpless.



Alfie was in an oxygen tank for the first few days so I couldn't hold him but my midwife made me express milk two hourly and I soon had enough to try feeding him. This meant that they let me take him home much earlier than they might have.

Also, the CMV left his system in such quick time that the hospital questioned the results and re-tested him. This was a big deal - if the CMV had remained in his system at a high level, he would have had a really nasty treatment (a bit like chemo) that would have lasted 6 weeks, would have meant surgery and other complications and undoubtably would have affected his development. As it was, I'm sure the breastfeeding helped him to fight off this illness and has reduced his chances of getting more complications. Here's some information about the health benefits of breastmilk http://www.babyfriendly.org.uk/health.asp

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


People told me 'take each day as it comes' and 'take one day at a time' but I really don't know what that means. I'm always thinking about the future, and what fun is it having a baby if you can't think about how they will grow up? These are my tips for dealing with your baby being in hospital:

Imagine the very worst thing that could happen and then visualise yourself dealing with it and coping with it. Then let it go.
After that imagine the outcome you want and let that be the reality you live with for the time being.

Take the phrases 'I can't cope' and 'It's not fair' and 'Why me/him/her' out of your vocabulary. If you don't say them, it helps you to stop feeling them.

Eat a great deal of good quality chocolate*.

*This might seems a bit weak but it helped me.

Englishers in Nova Scotia

Matthew and I went to the 'Progress Centre' picnic today http://www.progresscentre.com/. It was a gorgeous, sunny day, and a really lovely do - it was for children who have developmental delays and their families, and there were quite a few kids there who had Down Syndrome. Really cute kids on the whole, although the teenagers were very teenagery (i.e. not cute at all). Noah hid under a picnic table for most of the time due to a very scary Dora the Explorer and an even scarier clown. Alfie was very popular with some little girls who kept peeking into his stroller.

I think there will probably be some suitable girlfriends around here for Alfie when he is older - I will resist the temptation to arrange a marriage now and will generously leave him to make his own decision when he's of age, but I'm heartened to see a such good prospects.

When there are a lot Canadian people all together, I suddenly get feedback on my English accent - it's like being on an old fashioned long distance phone call where you can hear your own voice echoing around your head after every sentence. Luckily people here are SO friendly here. Matthew and I have been comparing our 'that would never happen in England' notes every night.





Halifax is different from London because:

Everybody smiles at you when you walk down the street with children (apart from the man who's renting out his house up the road - Mat went round to view it and he made him pretend to sit on a non-existent sofa and refused to let him walk through one of the doors with the spooky phrase 'no, we don't use that door' - so he's not that typical).

When you realise you are cycling on the wrong side of the road, cars on the other side of the street stop to let you do a U-turn.

When you buy a bike you can test drive it out of the shop without leaving anything behind by way of security, and they even lend you a helmet.

Conversations in shops can last for about 20 minutes and people don't think you are mentally ill if you talk to them.

It's incredibly easy to make friends (I've had four play dates for Noah in only two weeks), however, Mat needs a drinking partner, which isn't that easy to find without seeming desparate.

Alcohol is only sold in government run shops and is one of the few things that doesn't seem half price when you translate the cost from dollars to sterling. And you can't buy it on Sundays.

The weather is better - it's still like mid-summer and it's late September.

There is so much produce in the supermarkets - it takes about half an hour just to walk down the jam aisle! All the vegetables are sprayed with water to keep them looking really succulent, and, I have to repeat it - there is SO MUCH!!!

Alfie has Down Syndrome

We have just got back from Down Syndrome 101, a really good lecture by Lyn (someone) from the Canadian Down Syndrome Society. It's made me think back over the last three months - seems like a lifetime since Alfie was born - and one of the things that stands out is how lucky we have been with our friends and family. They've said all the right things, been so supportive, and more.

It's called Down Syndrome here in Canada, rather than Down's - the reason being that John Langdon Down didn't actually have the syndrome himself, he only identified it - so it's not his syndrome. I guess in England we think that everything is really owned by posh white men, whether or not they had it themselves, so it makes more sense to use the possessive ''s'.

During the lecture we were asked 'what do you think is the most commonly held belief about why a woman would have a baby with Down Syndrome?' - it turned out that people thought they had done something wrong, been near radiation or something. Mat and I both thought the answer was going to be 'because we were the right parents, we were lucky to find each other, and it was meant to be'. That must just be a reflection of how happy we are with our lovely Alfie.

I think I've always thought I might have a child who had Down Syndrome. I didn't have the nuchal fold test with either Alfie or Noah because Mat and I both knew our children were wanted no matter what their level of ability, health, or looks. When he was born I had two real concerns - one, for his health, the other was about people's reactions. I really didn't want people to feel sorry for us or think that the birth of our lovely baby was a sad thing. Luckily, everyone was really positive and supportive. We received so many congratulations and the only comments that annoyed me were from people we didn't know.

At first it really grated when people said 'they are such happy people' or 'your child will be really friendly and cuddly'. There is something very annoying about people telling you what your child's personality will be when they're only a few weeks old - and also, they are wrong! When our health visitor said something to this effect I asked her how an extra chromosone could possibly mean you wouldn't be grumpy when you were older. The answer is that Alfie cries and smiles and grizzles and burps just like anyone else, and he will continue to have good days and bad like everyone else.

Mat and I just feel so lucky with both Alfie and Noah, they are such lovely boys.

Now I don't mind so much if people say 'they're lovable people'. They are really just reaching out - what they are really saying is 'I think your child is nice and it's not a bad thing that he has this disability'.

The other thing I found hard was all the information we were given about schools and job prospects in the future. Matthew pointed out that if we'd been given the same information when Noah was born, telling us what his future and adult life were likely to hold, we would have freaked out the same. When you have a newborn baby you are really only interested in breastfeeding and the next 5 months. You shouldn't have to consider anything of the future - and you really don't know what any of your children will become.

------------------------------------------------------------
Here is the notice I made for visitors and never gave to anyone!...


Our newborn baby has got Down’s Syndrome. We are just getting to used to having a new member of our family, and one who has different needs and abilities. We aren’t getting very much sleep, and are likely to be a little sensitive. We would be very grateful if you would bear in mind the following:

Notes for Visitors

DON'T...

Stay for ages - unless you are going to help cook, clean, or babysit!

Tell us what personality our child will have when he/she is older (we are looking forward to discovering this ourselves).

Refer to people who have Down’s Syndrome as ‘they’ - as in...”they are very floppy” or “they are very loveable”. Perhaps try “if you have Down’s Syndrome you are likely to be more floppy” instead.

Forget that all children are different and unique, no matter what their genetic makeup.

Visit if you are ill or have been close to someone who has a contagious illness during the past week.

Visit if you think this is the worst thing that could ever have happened. We are very positive about our wonderful baby and think that we are blessed. We don’t want anyone else spoiling our fun.

Imply that it might have been better to have had a test and terminated the pregnancy of our lovely baby.

Tell us that you don’t like the name we have chosen.

DO...

Talk more about how cute, gorgeous and perfect our baby is, than discussing Down’s Syndrome and it’s effects.

Let us continue to believe that our baby is the best baby ever born, and obviously a genius.

Offer to make tea and/or coffee.

Bring presents!

Make sure you know something about Down’s Syndrome before you visit. There is loads of up-to-date information online. Things have changed a great deal during the past 20 years.

Focus on possibilities and abilities rather than difficulties and disabilities.

Tell us how well we are doing.

Say ‘Congratulations’!

Setting up

I'm typing with one hand and holding Alfie with the other - typical mum stance.

Mat is taking the rubbish out (is it trash? garbage?). He has made it clear this is not his role but as he's the only one who's read the recycle guide he's stuck with it this week. We've just moved to halifax, n.s. and the recycling is excellent - but a bit scary - there's talk of fines for the wrong thing. All the compost is put out separately. Frances down the road has just told us that if they see a banana skin in your garbage they won't empty it (is she joking? it's hard to tell).

Find of the day is the Halifax Stitch and Bitch
If I can express enough milk I'm going to try and join up. My knittings a bit elemental at the moment but I miss our London S&B already.

Nice piece here on Mat's last DJ set in London















There are some pensioners circling our recycling now - I think you can get 10c a bottle if you take it to the recycle centre. Mat's gone out to have a chat.
Everyone is so friendly, I made some new friends in the park earlier, they have a son Noah's age (2) and we're going to meet up next week. It's such a shock after being in London for so long. My sister pointed out that if you chat too long to people back home they think you have mental health problems or are trying to steal from them. Even the doctors receptionists are nice here.