Breast feeding a baby with Down Syndrome

Breast feeding.

One of the most natural things in the world. We humans along with all mammals have been doing this since the year dot, and we wouldn’t have survived with out it. Why then do so many women find breast feeding difficult, and some impossible. There are many reasons some women and babies can’t breast feed but Down syndrome is not one of them. Yes it might be more difficult and yes it takes effort and perseverance but it is possible and don’t let anyone tell you otherwise. Your baby will need to be fed and there is nothing wrong with formulas whether it be to bridge a gap while you get breast feeding established, while your baby is in special care and can’t be breast fed or your boobs just need a break. You are not a bad mother for turning to formula you are feeding your baby and that’s what matters.

I desperately wanted to breast feed Caleb for many reasons. I wanted that bonding with him and the feeling that he needed me what ever, but it did not happen for many weeks. There are other reasons I wanted to breast feed.

1. It would help me loose that baby weight. Breast feeding is meant to burn between 200-500 calories a day which if you are trying to shift a few pounds is a great way to do it. You still need to eat well though. You should not diet just because you want to lose the baby weight if you are breast feeding. You will need more nutrients as you are passing some to your baby and you will become deficient in vitamins and minerals if you don’t have a healthy balanced diet when you are breast feeding.

2. It’s designed specifically for your own baby. You make the milk your baby needs. There is this sort of backwards passing of information from your baby’s saliva which goes into the breast and signals to your body to produce what your baby needs at that time. For example if your baby is sick your breast will produce various immunity proteins for your baby to drink which will help them get better quicker. Also if your baby is going to have a growth spurt you produce more essential proteins and fats for the energy they will need to grow.

3. It’s free. Seriously formula is not cheap and for those mums who have tried but cannot breast feed it is hard going on the wallet especially if you are on a budget.

4. Colostrum. Or liquid gold as some people describe it. When you pump colostrum it is thick and the colour of custard. Colostrum is the first milk a mother produces and is high in proteins, fat, vitamins and minerals as well as immunoglobulins and white blood cells. In the first few days of your baby’s life these can be absorbed through the digestive tract into the blood stream. You are basically passing your immunity to your baby and it’s the first thing you can do to protect them from illness.

Colostrum is vital for a newborn baby as without it they will have no protection from harmful bacteria and viruses that can make them ill and they will have to fight them off alone. Breast feeding also allows the good bacteria to colonise the gut as your breasts are not sterilised like bottles so your baby will be taking in these good bacteria and allowing them to live happily inside helping your body to breakdown some foods later in life, producing some vitamins for you and helping to fight off invasion from the bad bacteria.

So you can see my motivation. There is one other piece of vital motivation for breast feeding a baby with Down syndrome. The act of sucking at the breast is very different to a bottle or a dummy. The baby will use different muscles and their tongue in different ways for breast feeding. Plus getting milk from a breast is much more hard work so requires stronger mouth muscles than for bottle feeding. This in the long run will help the baby with their speech development as these muscle will already be the strongest they can be.

As many people know people with Down syndrome struggle with speech due to low muscle tone. This makes the forming of words difficult for them. It’s not that they don’t have an understanding of what they have been asked or what they want to say it’s that it is such hard work to get it out that they will often just use short words or phrases because it’s easier. So anyway breast feeding is the best for speech development.

So scroll back a few months to Caleb birth. After my C section the midwife placed Caleb to latch on which he did straight away. I was amazed. He was born at 37 weeks and I was so prepared for him to be weak and need to go into NICU that I couldn’t believe he was doing it. He kept sucking his top lip (which he still does now) which was a good sign that his sucking reflex was well developed. But this good luck did not last for long. Caleb quickly because weak and when I tried to feed him he would latch but only do a few sucks. Not enough to get any colostrum out. We tried pretty much every hour to get him to latch and I started hand expressing colostrum to give him in a syringe. This took me about half an hour to get just one ml of colostrum and this was not enough to keep him going let alone to get him stronger. So after about 12 hours of him only having a few mls of colostrum the midwives asked me if i was particularly against formula. I told them no. Yes I wanted to breast feed him but he had had pretty much no food since he was born and I knew he would only get weaker if we didn’t get something into him soon. I wanted to avoid the need for a feeding tube and a stay in the special care baby unit so they went and fetched him a bottle.

And he drank it.

He drank half the bottle in about 5 minutes. He must have felt soo hungry bless him. So success, we knew he could suck and we knew it was going in. So we then decided to try a bottle every four hours with breast feeding attempts and hand expressing in between. He still needed the colostrum so I had to do my best to get as much into him as possible. This routine continued for another 24 hours. I set multiple alarms on my phone to remind me to feed him and to wake me up. After this first 24 hours the baby gets a heel prick test to check their glucose levels before being discharged. Caleb was 1.5mmol/l and it needs to be above 2.5 mmol/l before babies are discharged. His temperature was also low 36.4 degrees C so he was burning all his glucose trying to keep his body temperature up. So as well as wrapping him up warm we had to up his feeds to every 3 hours and then retest his blood an hour before his next feed to check that his glucose was coming up. Which it did and so did his temperature. So we were discharged with instructions to feed every three hours and for me to continue trying to breast feed him and expressing and feeding what I had expressed.

The first few days were really hard. Feeding every three hours, expressing and trying to feed him i between. I think I got only an hours sleep each time I tried to nap. Caleb was so sleepy he couldn’t feed and would only take a bottle. When my milk came in I started pumping to get him on to breast milk and was able to get enough for every other bottle within a few days. As my supply increased I was able to get every bottle to be breast milk by the time he was two weeks old. This really took its toll on me because it would take him maybe half an hour to drink the milk and then I was spending double that pumping to get enough for him as a pump is never as good as a baby at getting milk out.

The breast feeding however didn’t improve. He could latch but not very well and when he did he just gave up after a few sucks. We saw a breast feeding helper at the hospital when I went for a check up and she printed me off lots of information from websites about breast feeding a baby with Down Syndrome and she watched me try to feed him. She suggested a position change to the football hold which initially did work but I struggled to hold him this way as it is not very comfortable and strains your arm a little. So we carried on the routine we had which seemed to be working. He was getting fed and putting on weight and had plenty of wet and dirty nappies. I managed to find an electric pump which someone very kindly gave me for free and that really helped get a good amount out. I was previously using the nature bond silicone pump which is a passive pump and can be hands free although if the suction comes off be prepared to hold on quick other wise it will spill everywhere and there is nothing worse than seeing your hard earned work spill over your clothes.

The electric pump I used was an Ameda and you can order extra parts on amazon. It worked really well for me once I found a speed and suction pressure that worked well.

Then about a month in came the breakthrough. A work college of my sister had suggested I try nipple shields. She had had a premature baby who was in special care and they had used nipple shields for her baby. They work by covering your nipple and making it like a bottle teat this means the baby can suck and still get milk as they know how to use a bottle teat. So my sister went to mother care and came home with a set of mam nipple shields. I sterilised them and tried it at the next feed.

It was like magic.

He took to it straight away. I couldn’t believe it. It was such a relief to know I didn’t have to spend all day feeling like a cow, constantly attached to a machine or sat at the dinner table with the silicone pump under my top. I still had to clean them after each feed but that took much less time although I did keep the bottle feeding up at least once a day to make sure he had a good big feed as I couldn’t tell how much milk he was taking in. He would feed for around half an hour each time sometimes longer but he also leaked a whole load so it was bibs each feed and a muslin under me to keep me dry.

I kept this up until he has 9 weeks old. By this time I felt he was strong enough and aware enough to try to wean him off the shields. And for this you have to go cold turkey. You can’t take half a shield off and do it gradually it’s either shield or no shield. It took some going but I managed to get him to latch a good few minutes of trying. He wouldn’t open his mouth wide so he had to learn that first and then to suck something that is a lot softer than what he was used to. At first his latch was poor but he was feeding well and for a good amount of time each feed. But this poor latch was making me sore and some feeds I had to cut short as I just couldn’t take the pain any more. This was quite disheartening but Lansinoh hpa lanolin cream to the rescue. This stuff is amazing and really helps heal that soreness. You can also use it before a feed spread all around the nipple as when you do get a latch it helps more of the breast tissue to slide into the babies mouth with each suck and therefore more of the nipple travels to the back of the mouth and gives a deeper latch.

So this continued for a few more weeks and gradually he learnt to open his mouth wide and got a really good latch. By 11 weeks old we were fully breast feeding and haven’t looked back since. I still keep the bottle feeding going at least one bottle every few days just to keep the knowledge of bottle feeding there in case we should need to use a bottle when someone else feeds him.

So there you have it. You can breast feed a baby with Down syndrome. And mine is not the only story. There are plenty of other mums who have written their story of their breast feeding journey some of which I have linked below.

I have also linked below the websites that I was given for tips and advise given to me by the breast feeding helper. And of course there is a Facebook group full of like minded mums some who have struggled and some who have not who will be pleased to help and answer any questions you may have.

Happy feeding.