Breastfeeding a baby with Down syndrome

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I just want to start by saying this is in no way a ‘breast is best’ post, and I am not intending to make anyone feel any guilt if they couldn’t or just didn’t want to breast feed. I didn’t write this with any intention of making anyone feel bad, but I am very aware of people not being given the right support in hospitals after finding out their new baby has Down syndrome. It is often assumed by midwives that baby will just find it too difficult and there seems to be a lack of knowledge and training. Not in all cases, but many. I just want to share our experience and let women know that although it will not be easy, it can be possible.
Breastfeeding any baby is hard, in fact it quite possibly the hardest thing I have ever one. With my first son I remember the bleeding nipples and the intense pain every time he latched on. He also fed every thirty minutes for 12 weeks. Yes, every 30 minutes! Honestly, I was pretty much topless for the first 3 month of his life. He was definitely a sucky baby, and as he didn’t have a dummy I think I was a substitute one. And he fed full on for years, he only stopped at aged 2 because I got pregnant with River and my milk dried up. He was just a really intense feeder and wanted breast all the time.

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Even though the first few months were tough, once we crossed that line it was incredible. By far the hardest and most rewarding thing I have achieved. To be honest, it also made my life a hell of a lot easier. He never had a bottle, he was always with me so there was just no point. So I never had to sterilize anything or make up a bottle, pack a bag to go out or worry about getting home for feeds. I just needed to whip a boob out, which I did often and without shame! Never had a bad reaction either and at one time I was even convinced it wasn’t as bad as people say. I think I may live in a bit of a bubble though because I never notice bad reactions to anything, or maybe I just don’t care enough to pay attention. I also never had to get out of bed for night feeds, we co slept and I’d latch him on and feed him. It got to a point as he got older, where I don’t even think I woke up half the time. We had sleep in our house!

Anyway, I had such a fantastic experience with Skyler that there was never any question FB_20150420_21_31_13_Saved_Pictureabout whether I wanted to breastfeed River. And I certainly didn’t think we would face any problems, as I had years of experience under my belt. But things didn’t really go to plan and it was a really stressful time, I just didn’t know where I was going wrong. We now know that the difficulties we faced were due to his Down syndrome, but as he wasn’t diagnosed until 6 months old we had no idea why he couldn’t feed at the time. In reality, he didn’t have the strength in his mouth muscles to latch but we just didn’t know that.

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I often wonder if I would have stopped breastfeeding if I had known he had Down syndrome, whether I would have just assumed he couldn’t do it. I have heard from many mums that it seems to be a one size fits all with midwives in regards to breast feeding a child with Downs, and that size is that it can’t be done. Don’t get me wrong, there is some wonderful support out there and I’m not talking about all midwives. Some very lucky mums have had fantastic help and guidance when tackling breastfeeding and had a lot of success, but this does seem to be in the minority. There is a definite lack of knowledge as far as breastfeeding and Down syndrome is concerned, and a high percentage of women haven’t had the support they need and have been persuaded to move to a bottle almost immediately. Yet I now know of many women who feed their child With Down syndrome, so clearly it can be done.

 

 

I’m definitely not saying that all children with Down syndrome will be able to breastfeed, there is a chance that it just won’t happen and you need to prepare yourself for this. I know of women who desperately tried and were devastated when it just couldn’t happen. Please be aware that this may happen and don’t feel guilty in any way.

Although River and I are now 28 months into our breastfeeding journey and still going strong, he has also been very healthy since birth with no complications. Our struggles were very real, but nowhere near as difficult as trying to feed a baby in ICU or with various health issues. I’m just saying that don’t assume that breastfeeding is not an option for you because it is, and with the correct support there is every chance that you will be able to provide your child with breast milk. It won’t be easy, but my god it will be worth it. River is rarely ill, but when he is, breast milk has been wonderful for his immunity and also for stopping him getting dehydrated. It’s helped the muscles in his mouth massively both in speech and eating real food. The benefits for him and myself have been huge.

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Children with Down syndrome are prone to infections, have weaker immune systems and bowel problems and breast milk is a wonderful protection against these things. It also provides extra stimulation for your baby and will help strengthen mouth muscles. This will be a huge advantage to them with talking and eating as people with Down syndrome often struggle in these areas. There are just so many advantages and it should never just be assumed that it can’t happen. Mothers and babies deserve that chance and the correct support.

 

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So I’ve put together a list of things that you may struggle with along the way and some tips to try and help you overcome them. I’ve asked other mums with different experiences to my own to help me out, so I could add a wider range of knowledge.

 

Your baby will be sleepy

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This was a huge struggle for us, as River slept a lot as a baby. There were days when he hardly seemed to be awake at all, and he was so sleepy and placid that getting him to feed was so hard. It was rare that he would have a good long feed, we had to do short frequent feeds throughout the day. I felt like I was constantly trying to get him to eat! Night feeds were the worst, he just was not interested and I was really worried that he wasn’t getting enough. With Skyler I could sleepy feed him all the time, he’d practically feed all night if I let him. This wasn’t possible with River, I really had to stimulate him before I attempted feeding him and make sure he was awake. I would undress him, wash his face, blow on him, whatever it took. It was really tough for the first few months but it got much easier in time and he became a lot more alert. Now he hates sleeping and fights it as much as he can!

 

 

 

Weak mouth muscles and failure to latch
This was also a big issue for us and it was so frustrating. Sometimes if I got the positioning right he would latch beautifully, other times it felt like we were trying for hours and he just couldn’t suck. He actually latched on right after birth, but after that it really went down hill. I found a position that really worked for us, it must have been something about the way he could get a good grip in that position. I would wrap his legs around my waist, support his head and neck with one hand and support my breast with the other. He was so comfortable in this position and when we discovered it, it was such a relief. I must have looked so funny when we were out in public though, a tiny little 5lb baby feeding sat up with his legs wrapped around me haha. Whatever it takes I’m afraid, I just wanted my son to eat. Again, this lasted a few months and then his mouth got stronger and he got into the swing of things.
I’ve also been told that a firm pillow to rest your baby on is a big help, as many babies with Down syndrome will have low muscle tone. The pillow will help support your babies weight and help firm up there position.

 

Skin to skin

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This is so important and can make a big difference to your breastfeeding journey. If possible get skin to skin immediately after birth, if not then as soon as is possible. Of course if your child needs medical attention that comes first, but skin to skin is beneficial at any time. It will have an impact on your bond and the babies ability to breastfeed, it will also help boost your supply.

We loved skin to skin, and even when River wasn’t feeding he was often snuggled into my chest. I loved to wrap him up in his Moby Sling and let him sleep whilst resting his head on my bare chest, and you could just see how comforting he found it. Even now he loves to climb up on my chest and have a good old snuggle.

 

 

You may need to pump
I’m a member of a breastfeeding group on Facebook, for mums who have a child with Down syndrome. A few weeks ago I spoke to a mum who’s daughter just couldn’t establish breastfeeding, it just wasn’t going to happen. This mum has been expressing milk for 18 months. 18 months! She says she had to buy an extra freezer to store it all and has a huge supply. Now that is one hard core breastfeeding warrior! I’ve never been able to pump, for some reason it just never happened for us so I’m thankful that I could always be there ready to whip a boob out. This mum gets huge respect from me.
Also though, even if your child can’t latch immediately, as they get stronger it may become possible so pumping may only be temporary. Keep up with the skin to skin and keep attempting to latch, it may well just happen.

If your baby has to spend time in ICU, pumping can help you give your baby breast milk as it can be administered through their NG feeding tube. You can still give your baby that gift. I know many mothers who have done that and have stated that they felt so helpless seeing their babies needing care, that this was one thing they could do for their newborn themselves.

I’ve been advised by other mums that these are the best pumps to use – Madela Swing, Phillips Avent Manual, Phillips Avent Comfort Electric Pump, Madela Symphony

I was also advised by a mum about a Madela Supplement Nursing System. It looks incredible, and she actually advises that any mum who has a prenatal diagnosis and wants to breastfeed invest in one. It attaches to the breast and as your baby learns to suckle, it will release a supplement milk as well as breast milk. Your baby gets a good feed and your milk supply is stimulated. Genius!

And also with bottles you will probably need to try a few before you find success, but recommended to me by mums with experience are – Mama Soft Bottle, Lanisoh Momma, Madela CalmaHaberman Suckle Feeder and Madela Special Needs Feeder.

 

Insist and seek out the correct support
If you’re not happy with the support you’re receiving then make your voice heard, ask for second opinions and fight for what you want. Get all the information before your baby is born so you are well aware of the struggles and make that known if you are not being supported. It’s so important that you feel that people are genuinely trying to help you succeed.
Before even going into labor find yourself a lactation consulting, somebody who can support you and help you when you are too exhausted yourself. You are going to be both physically and mentally drained, and having someone there to help you establish breastfeeding will be so incredibly beneficial for you.
And also seek out other mums who have gone through the same thing, their information and experience will be invaluable to you. You can join online groups, find community groups and many associations especially for mums of children with Down syndrome. There is always someone to offer you some advice, support and just have a chat with. You will feel so much better for this I promise.

 

If it doesn’t work, you have not failed!
Please don’t feel guilty, sometimes it’s just going to be out of your control. You certainly don’t love your child any less and are not a worse parent if your child is not breastfed. It happens. It’s hard for a mother who wanted it so much and tried so hard, but you need to believe that this wasn’t you fault and let it go. There are so many other ways to help your child’s development and they are going to do just fine. Nobody who turns to formula after trying to breastfeed should ever be made to feel like a bad mother, because you are not. Believe that! And if you feel like others are judging you then let them, if it’s not that it’ll be something else anyway. Concentrate on you and your family, you’re what’s important and let that guilt go.

 

 

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So there you have it, my experience and advice on breastfeeding your new baby with Down syndrome. I really wish you every success and hope you have a beautiful nursing experience. And when it’s tough in the beginning and you’re exhausted and in pain, just try to remember that it will get better. Eventually it will be wonderful for both you and your baby, emotionally and physically, and is the best start you can give your new baby. And you’ll have beautiful memories when your child is growing up right before your eyes and eating you out of house and home!

Spectrum Sunday

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