We stayed in hospital for over 6 weeks, and in this time I learned how to advocate for a child in hospital. I exclusively breastfed Parker on demand, from the day after he was born including his entire hospital stay, and have ever since. Parker is now 1 year old.
When your baby is hospitalized and enters ‘the system’, it is easy for things to get overlooked or ignored, no matter the model or quality of caregivers. Questioning medical staff politely, for your own knowledge and peace of mind, is a valuable skill to learn.
An advocating model in the form of an acronym I use, is BRAND. Have you been asked to consider an NG tube for your baby? Were you told it is in the baby’s best interests to commence formula feeding straight away? Consider the medical decision to be made, while reading the following.
Benefit. What is the benefit to your baby? To you? Is it ENOUGH of a benefit to justify doing what they are proposing?
Risk. what are the risks involved in agreeing to course of action? What are the risks involved in NOT agreeing?
Alternative. What else can you try? Who else can help? Who can you talk to about this further? Is there a lactation consultant available? Do you need a different one, if you aren’t having a good experience?
Now? Or can the decision/course of action be delayed for some amount of time?
Decision. Make sure everyone involved knows your wishes, and decision in your baby’s feeding. Write it on charts, on the wall, everywhere you can.
Keep it in your pocket, on your smart phone, on a piece of paper. Always request as much time as you can. Delay decisions where reasonable to give yourself time, even 5 minutes to read this BRAND acronym and think it through. This doesn’t just apply to invasive medical procedures- something as simple as agreeing/not wanting to give your baby formula down a NG (nasal gastric) tube while waiting for your milk to come in. It is quite rare for milk to ‘not come in’ if you are pumping regularly and having your baby feed, snack or even just nuzzle at the breast regularly. In my case I agreed to a NG tube and gave him formula supplemented with expressed colostrum, because I was not able to physically hold him and allow him skin to skin contact. But once I was allowed to remove Parker from his humidicrib the day after his birth, I breastfed him and did not allow any further formula down the tube at that stage. Parker ended up having his NG tube removed around day 3 after doctors saw how well he was breastfeeding on demand.
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‘Íf you had the opportunity to talk to a mum at the beginning of her breastfeeding journey, what would you want her to know?’
Here are their answers to that question.
Drink lots of water – if your baby is in special care nursery ask for a photo of your baby to look at when expressing milk for them. It’s amazing how it helps! Hold their hand while you feed as well as skin to skin contact. I used to have to take clothes off my baby to wake her for feeds. Biggest tip would be that your baby knows just what to do, I just needed a warm cosy intimate environment – and I was near a glass window in a busy Special Care Unit. I worked with that – told my beautiful baby all about our lovely home – and just tried to stop stressing about weight gain, and relax more. Trust your instincts and enlist the positive and proactive nurses to help you. I feel like I could write a book on the subject! I fed Ella until she was 19 months old. I played with her toes, counted fingers, sang and read to her. Told her many stories of all the things she could do when she’s bigger! It was such a special time for us to really connect! -Deb McNairKeep at it! It is possible even if baby starts off in the NICU, bottled fed formula. Start trying ASAP and keep trying! If baby can latch and you produce milk, he/she will build up the endurance and strength to do so even if needs supplementing the first several weeks. Also find someone educated with experience in this as a good portion of medical staff can uneducated about Down syndrome. -Megan McDonough
During those first few shock-filled hours of my post natal diagnosis, one of my immediate worries was that I wouldn’t be able to breastfeed my beautiful girl – it had been such an important bonding experience with her older brother and I wanted the same for this little one. I asked the nurses to get the hospital’s feeding coordinator and also rang my friend , who is a breast feeding peer supporter, and got all manner of tips, which I didn’t actually need! Lottie breastfed like a pro from day one. Yes she was a little sleepier and needed a bit more encouragement but if anything she was more efficient than her non ds brother. I would say to a new mum – breast feeding any child, ds or not, undoubtedly comes with its challenges but the rewards far outweigh the effort. You may not have the easiest start, but give it a shot and your baby might well surprise you. Lottie certainly did me and taught me not to underestimate her. 19 months later, we’re still going strong xx -Emma Lambert
Babies with Down syndrome can feed, but sometimes with other medical conditions it can be too much, especially for those mums who can’t express. Sometimes you have to give up. In the end I think I was doing it less to help him and more so I didn’t fail. Sometimes you have to put the sanity of your baby and yourself before others opinions. Only you know what’s best for you and your child, others can focus on being perfect in their own lives before judging you! -Rachel, jacobs mum
I breastfed all three of mine, one with down syndrome. I was so determined as l was told it wasn’t possible..l fed her for 16 months. l went back to the doctor who said Pearl wouldn’t breastfeed, and made sure he knew she did! Just keep at it and don’t let anyone put you off. -LM
If at first it doesn’t happen don’t get too downhearted and don’t believe professionals and people when they say our babies can’t or might not etc. My best advice is to express if you can and feed them that way while still offering them breast and once they do get it you will feel amazing. I have been exclusively BF my daughter from 5 weeks old. – Nikki F
My son was not able to latch on, we tried and tried at first. I knew how important my milk was for him so I pumped and gave him a bottle with my breastmilk. Then at 6 weeks of age something told me to try to have him latch on. So, I sat down on the bed put him up to my left breast and he took it. That boy of mine held on for 3. 1/2. Years! Do not give up. ~ Chasity O in Montana
As with all kids find the position that works for you, it may not be a ‘traditional’ position but as long as the latch is ok who cares. Be prepared for feeds to take longer(only realised that after ds2&3) have your water, snack and tv remote to hand. Forget about the charts, use mummy instinct, as long as wet and dirty nappies are being produced you are doing a great job.(could be up to 7 days between dirty nappies). Good luck, it is possible. Claire mummy to E( bfed for 14 mths)
Be patient and determined, believe that your baby can and will do it! Try to have loads of skin to skin time with your baby, play around with different positions (I had to be a lot more ‘hands on’ with K than with my other children) and get advice from a breastfeeding specialist. I hired a hospital grade pump to keep my supply up in the early weeks which made a big difference. It took us around 6 weeks to establish breastfeeding – it wasn’t easy but I’m so incredibly glad I stuck with it. -Ursula A
I only have experience breastfeeding a baby with Down syndrome. She was very sleepy so I used to tickle her feet! A midwife told me to blow on her face, every time she stopped suckling I blew on her face and it seemed to work. Always listen to your mummy instinct, my midwife was trying to get me to supplement with formula but I knew that we were improving with each day, it took 5 weeks to get back to birth weight but we did it. It only started to become more comfortable and predictable at 3 months old! I know that if I had started to supplement I may not have carried on with the breastfeeding so it wasn’t an option for us! Mummy does know best and if you feel you are struggling and you decide to stop or not start then don’t let anyone make you feel guilty, above all you need to be happy. Xx -Laura S
It strikes me that it is also really really really important to say that if it is not possible to breast feed, or not possible to carry on persevering (for whatever reason!) then you are not a failure and you shouldn’t feel bad and feel that you’ve not been strong enough. At every antenatal class and round every corner there is so much pressure to succeed as a breastfeeding mum it’s bonkers. Of course breastfeeding is wonderful, the best possible start for your baby and should be encouraged, particularly if a group of people are being told otherwise by ill informed professionals. But for those who can’t, or had to stop trying, it doesn’t make you less of a mum. -P Raymond
The reason Chloe ended up being tested for DS was because I fed my other 2 girls myself and couldn’t understand what i was doing wrong when she wouldn’t latch on. I called the midwife in and that’s when paediatrics became involved. I was told she probably wouldn’t be breast fed…but persevered anyway and with time and patience she was breast fed until she was a year old. It’s down to individual preference (and babies)…and like everything else there’s no right or wrong way to do it, it’s what works best for you and your little one xx -Beverley
My son was tube fed for two weeks, then was discharged on bottles for a further 4/5 weeks (all expressed breastmilk) then I went on to breastfeed him until he was 13 months.
I’d say it may take perseverance especially if they have health conditions and get tired easily but babies with DS can and do breastfeed-I’ve met loads! Breastfeeding is so rewarding and the benefits for your baby’s health and oral development make it well worth the extra work it may take at the start. If you’re discharged on bottles just don’t force it, lots of skin on skin and it will come. If your baby is tired get a position that makes it easier for them. And wet and dirty nappies and general form is the best indicator, not the exact plotting of a graph. There are no breastfed only charts for babies with DS so those charts are not accurate and your baby may not follow them. Trust your instinct! -Nicola Woods
I was so worried that O would never bf because of what “everyone” said. Well, he latched right away and was my best nurser! I was really ticked in the nicu when the lactation consultant asked if she was able to come watch us (because she didn’t think that it was really going well). Well, she can to watch and don’t have much to say because we were doing it- right and well! I despise the notion that anyone will not be able to do something…it was a first important lesson in how much I can (and should) of expect from O. Why should I put limitations on him? Kids are more capable than we give them credit for some times!
Does this mean all kids with DS will be able to bf? No, because just like a 46er, 47ers are unique! -Jenny
Don’t listen to midwives who insist your baby will have trouble and find bottlr feeding easier. I had to convince many nurses that my daughter was breastfeeding about 3x as much as she would take from the bottle. They were very reluctant to believe me. She just loved breastfeeding and wouldn’t have the bottle. -PH
Eden is my only, and I was determined to breast feed. We struggled with her being very sleepy and having a weak latch at first. While we were in the hospital on the 3rd day of her barely taking down anything, a head nurse finally told us that I could pump. She showed us how we could finger feed her with a syringe! This was our go to method of feeding the first couple weeks but she was still not gaining weight well by week 3. My husband finally convinced me at that time that we should start her on supplemental formula. (I was reading a lot of the KellyMom site at that time, so I was against it.) But once we started breastfeeding and then supplementing some formula afterwards, she started gaining strength. (I wish I hadn’t waited so long to really start supplementing.) We used formula as needed until she was about 4 months, then I was gradually able to work her back to full-time BFing. What helped the most was having a supportive family and husband. What I would’ve done differently is not waited so long to start pumping in the hospital after she wouldn’t latch. I would have asked for a hospital grade pump, pumped for all her missed feedings, and saved that milk for her supplemental feeds. In my naivety, I didn’t realize that I should be pumping and syringe/bottle feeding her what she wasn’t strong enough to get for herself. Thus my milk supply dropped, and so did her strength. (We also didn’t think to send home the excess milk that I did pump in the hospital on day 3, so a lot of it got tossed out.) We supplemented formula when I ran out of my pumped milk, but it certainly didn’t negatively affect our long term BFing relationship. She breast fed until she was 1 year! (I loved BFing, until she got those little sharp teeth!)- Sheri S.
Sawyer is my first baby and we had no indication that he had Down syndrome until after he was born. So I was new at nursing and so was he. He didn’t have a strong enough latch at first, so in the hospital he was supplemented with donor milk. But then we had to switch to formula when we left. I kept trying and trying and trying. I finally gave up when Sawyer was about 8 weeks old. I pumped every day, though, and he got SOME milk every day, and his doctor said that was great — any amount of milk is all he needs to get those antibodies. Then when he was 12 weeks old, I un-gave up and tried again and we got it! It was pretty difficult for both of us to get into the perfect position, but it’s only gotten better with time. He’s 9 1/2 months now and nurses like a champ. Still not exclusively breastfed, but enough! Just keep trying if it’s important for you. – SYS
We were in the unique position of not yet knowing he had DS when he was born. So we just assumed that *of course* he would be able to nurse. He did have a weak suck and tired quickly, so we did LOTS of skin to skin and side lying nursing which I think really helped with allowing him to control the flow better (I tend to have oversupply, so a more typical nursing position can lead to my babies drowning in milk, when oversupply and gravity gang up on them!) Then we had the added challenge of jaundice, to the extent that our babe had to be in a light box to bring his levels down. The hospital staff encouraged me to pump, but we refused and instead requested to at least try a system of baby being in the light box for 1.5 hours, then brought to us to nurse for a half hour while wrapped in a blue light blanket, then sent back to the box. That worked reasonably well, and we did not have to pump or use bottles at all.- Crunchyconmommy
After Mack was born my nurses midwife brought him right to my breast. He had a hard time latching on but she was persistent as was Mack. It didn’t take him long to figure it out. Mack is my fourth baby so I was confused why he didn’t latch on right away. I was the last to know he had Down syndrome. Those that knew never said anything negative. His birth was such a wonderful experience and being able to nurse him was part of that. Mack is now 14 months and still breast feeding. -M.A
One reason I am glad I had a late diagnosis, is because there seems to be such a mindset that “babies with Down syndrome can’t nurse”, instead of going on a case by case basis depending on the challenges that individual baby is facing. I think if the only challenge is having an extra chromosome, most of the time our babies CAN be breasted, and instead lots are being “booby trapped”. – LH
The key is patience. Hollis was my first and I had no prior experience of breast feeding and he came a month early…2 days before our scheduled breast feeding class. I also was unaware of his diagnosis until after his birth. I tried multiple times with help from the lactation consultant, nipple shields (yuck), and some other contraption that didn’t help. I guess his latch wasn’t strong enough. So the hospital brought in the pump. He finally took a bottle of my expressed milk…still needing lots of cheek and chin support. Then they rushed him to the NICU bc of breathing problems. While in the NICU I continued to supply him with my expressed bm. He stayed there for 15 days and everyday I would try to work on his latching. I’d schedule appt with the NICU’s lactation consultant to help. Finally he got it! I was so excited, I cried! But bc he was having trouble gaining weight (burning too many calories breathing and feeding), we had to supplement all of my bm with human milk fortifier for extra calories. The doc gave me the ok to nurse for only one feeding. It took more practice when we got home, and I was able to increase my nursing. But, I still mostly pumped. I still treasure and miss those quiet moments with just the two of us in his bedroom. -LD
Ours was a pretty normal experience. It helped a LOT that I’d already nursed two babies so I knew how it should all work. I had a c-section, but they laid Cade on my chest immediately after birth and he stayed there for
most of the day, even as they sewed me up and took me to recovery. He rooted for a bit and then the nurse helped him to breastfeed while I was in recovery, so about 20-30 minutes after birth. Cade nursed pretty well almost immediately. He caught on quickly. We had a little trouble once he was a few days old and I returned to the hospital twice to meet with the lactation consultant and have him weighed, but even then the trouble was minor. What helped the most was my own prior experience and the support from the LC’s in the hospital. One in particular was super helpful. I wouldn’t do anything differently. Cade is 9 months old and has always been breastfed. He’s also taken well to solid foods and can drink from a straw with a little bit of help. ~Heather H.
I am a breastfeeder. Breastfeeding is part of my identity as a mother. I don’t know what I would do if I couldn’t nurse. Since Patrick is my 3rd I knew what I was doing. So after he was born the nurses kept asking me if I was ready for the pump. I kept telling them no. I was not pumping. I pumped more than enough with my 2nd son. They were pushy. They keep asking about feeds and stuff it was horrible. About 24 hours old things started clicking and nursing started working. The 2nd night in the hospital I had an “old timer” nurse come in about 2am to check on us. We sat chatting and I told her I was uncomfortable with all the pumping/bottle pushing and was surprised in a baby friendly well known hospital (UCLA Santa Monica) I was experiencing this. She told me to ignore them. It was because all the nurses just “know that baby’s with Ds can’t nurse”. LOL They didn’t know me. Had he been my 1st I probably would have given him formula by the time he was 8 hours old. I had a different experience behind me that lead me. I am not saying anything about anyone else’s experience. If you used formula or bottles, great! I am sure your babies health was your priority as a Mom! I just wanted to share the perceptions that are out there about what all babies with Ds are like. -LC
I prepared and prepared by researching everything I could. I learned a special hold called “Dancer Hold” and prayed!
After Patrick was born he really struggled (and so did I) for about 24 hours. After that it was pretty easy. He latched on and nurses like a champ. Actually he has no idea how to use a bottle. He licks the nipple. He will be 1 in a week and we no longer try to get him to take a bottle.- LC
Cop latched immediately after he was born and nursed for about an hour. He had a strong latch from the get go. He nurses more often than his older brother did, he loves the boob. He gains well despite having reflux and MSPI among other allergies it took me a while to figure out. It was a great fear of mine that turned out to be unfounded. -Drea E
If you are determined, then you CAN do it. But remember that GPs and Health Visitors are not experts. I would always advise anyone to seek the advice and support of a breastfeeding expert. Mine helped with positioning, latch and even the right way to squash enough of my boob into Amos’ face so that he could latch on. Small things, but vitally important! -Emma Smith
Like other moms, I was very concerned that my son would not be able to breastfeed when we had our prenatal diagnosis. We had several weeks to prepare for his delivery and I was very discouraged by the information that I read on the internet about the low probability of being able to breastfeed. I became very determined to make sure that my son could breastfeed. As soon as he was born, breastfeeding was my first mission (along with loving on him of course). Our son was born full term at 38.5 weeks and was 8 pounds at birth. He had (and still has) low muscle tone and needed a great deal of support while breastfeeding. He did not require any time in the NICU. I attempted to put him to the breast immediately after birth. Along with some assistance from two lactation consultants in the hospital, he was able to breastfeed fairly well by the day after he was born. He was able to breastfeed effectively, but was a very sleepy baby as a newborn. I would have to wake him to eat and then he would typically sleep after a feeding. I would say he really had the whole breastfeeding process down by one week after birth and he never had any weight loss. I was able to breastfeed until just after his first birthday with some supplementation around 9-10 months. My supply wasn’t quite as high the second time as it was with my first born, but I would say that both children were similar with regard to amount and frequency. I did struggle with plugged ducts fairly frequently with my son. I’m still not quite sure why that was. -Jen
I did some combo pumping and nursing, though I mainly pumped because I am an OCD NICU/Peds nurse and wanted to ensure that Ellie was getting enough milk with as sleepy as she was in the beginning. I frequently nursed her for comfort and closeness, and often nursed her when we were out and about so that I didn’t have to worry about warming pumped milk. When we were home, I did a lot of pumping and storing of milk – sounds totally backwards, I know. I was able to store enough, however, that she still got my milk until she was 14 months. I was very contentious about how much and how frequently Ellie was fed, much like I would be with my babies at the hospital – again, this was just me being very OCD. I did find, however, that we got a really good schedule down very early on, which helped me maintain my sanity. We had no real issues breastfeeding. I used a nipple shield for the first week or two, until she learned to latch. I made enough milk for two babies – really! I would pump upwards of 24 ounces each morning (insane amount of milk)! I would say that I enjoyed my BFing experience until it was time to return to work in the fall, when it became difficult to find time to pump, though it was still doable. Another big thing I would stress during BFing a baby with DS would be choline supplementation. (You can search google for further info.-K) -Lauren O
For the first 24 hours of Giuliana’s life, I could not get her to stay awake for a feeding. For those first 24 hours, no one suspected Down Syndrome (or at least no one had the guts to say anything…but that’s another story). G was born at 7:10am and all day and into the night, I could not get my girl to latch on and stay awake. The night nurse had to give her formula in a bottle (a new nursing mom’s worst fear) while I pumped. With some help from the lactation nurses (they are a godsend), we finally got a good feeding the next morning. Giuliana was one of the lucky ones and never spent time in the NICU. She had a heart defect (a large VSD and small ASD) so we needed to make weight each week to hopefully avoid surgery. I was persistent and luckily my oldest son (who doesn’t have Down syndrome) also had difficulty breastfeeding when he was newborn. So I was no stranger to how hard breastfeeding is and can be. To make sure Giuliana made weight, I would breastfeed every 2 hours during the day and 3-4 hours at night. That meant I had to wake a sleeping baby. Because of her heart defect, 10 minutes nursing would tire her out and nursing more often was the only way to get the calories in her. My persistence paid off, and luckily she squeaked by every week on the scale until she was 4 months old when she started falling off the growth chart. It was time, her doctors decided, for open heart surgery. Fast forward almost 1 year, Giuliana is now 16 months old and still nursing strong 3-4 times a day! My biggest accomplishment! -Angela R
Josee was allowed skin to skin contact straight after she was born where she mouthed at the breast … I am so thankful for the doctors that allowed this as I think it set her up for later on. She was whisked off to special care for a once over and to check her oesophagus did actually lead to her stomach. I then expressed colostrum for her and they took it to her whilst I had stitches. Once I went to the nursery an hour later she attached straight away. However because of her low tone and sleepiness she wasn’t able to sustain feeding for very long. I knew that she was going to be ok with feeding from that first attempt but I also knew I was going to have to work really hard to keep my supply going and keep her awake! She lost a lot of weight in hospital and more when she came home. The things that helped me most were:
Using a tetra feeding cushion (this allowed her body to be on something firm to feed)
Using a dancer hold where I could support her chin helped her to keep drinking when she was tired
Pumping after every feed (to keep my supply going) and giving her top up feeds via syringe, bottle or cup. Even though it was small amounts it impacted positively on her weight.
Skin to skin contact as much as possible through the first few weeks as my supply was established helped a great deal too.
Also not waiting for her to be fed but proactively feeding her helped immensely.
I pumped for 9 months and then it was all up to her … It really felt like at 9 months we were just beginning our Breastfeeding relationship! She started wanting to be fed more and more .. It was like all our hard work paid off! After feeding my other 2 kids I was determined to feed Josee. Having a prenatal diagnosis meant I had plenty of time to research any strategies that would help us. The only thing I would have done differently, was to pump from the start- my milk took days to come in and weeks on end to establish. I am so proud that we persevered and love the bond that has come from breastfeeding my baby with Down syndrome… She is nearly 12 months old and I hope to breastfeed her until she is at least 2!- Joelle Kelly
When ‘everyone’ is telling you to go and express, your support person needs to be booking an appointment with a lactation consultant, telling you to get your top down and sneakily latch that baby on!! Oh, and they should be telling you a million times a day that you are amazing! -E Guthrie
I wish breastfeeding had worked out for us. It broke my heart that it didn’t. He had a great latch and seemed to be getting enough by the sounds of it, but he just couldn’t get enough. I turned to pumping and am gratified that at least he has thrived from my milk even if it comes from a bottle. (Doubled his birth weight at 3 months old and has been 40% on the typical growth chart). – N.P.
Do not listen to “professionals” who say your baby will not/can not breast feed, I know loads of mothers who breast fed their babies with Down syndrome – unless there’s a medical reason then do it if you want – mum knows best Down syndrome or not! -Claire Williams
I would say, stay positive, be persistent, ask for help and know your baby will be loved and get all it needs from you, no matter what! Xoxo -Chelsea Baker
Hang in there, my daughter was tube fed for 4 days, bottle fed for 5 weeks and then learnt to breastfeed directly then. Do get expert help if you need it. – KC
You can do it! My little one always had trouble staying awake during a feed, so I would stop and change his nappy to wake him up a bit and then carry on. I also expressed a lot for the first few weeks as his suck reflex wasn’t great and I could see how much he was taking. Oh and I couldn’t do demand feeding because he never cried to be fed so I just fed him every few hours. But I breastfed or gave breast milk in a bottle until we started on solids at 6 months xx -Suzanne Bolt
Knowledge is power. Do lots of research. It is possible, even just 1 breastfeed a day is beneficial. Whatever happens you are an amazing mummy. -S Davies
Be patient, try and be relaxed and positive about the whole experience. It may take your baby and little longer to learn how to latch and strengthen their suck, but persevere and most of all be patient, as it’s bond like no other. -L Clift
See a specialist bf midwife before you even have the baby to talk through worries and concerns and never stop asking for help. Do not be pressured into doing something you don’t want to do and if it doesn’t work out then don’t feel guilty about formula feeding. Be confident that your decisions are right for you. -Linsey
I’d tell a new mum, that telling a mum that ‘you’ve worked here for 30 years and never seen a baby with DS leave breast feeding’ sounds like my kind of challenge, that breast feeding ANY baby is hard work and will require patience and determination, that it’s the best way to feel ‘useful’ after receiving life changing news, that some babies with DS or not will struggle and information is out there, that the hospital Infant Feeding Coordinator needs to get down and see you straight away, that the real business of breast feeding starts when you leave and get relaxed in your home environment so not to take the hospital environment with kgs and Mls too personally, that even expressing the tiniest bit of colostrum is an amazing feat after what you have been through and that the benefits to your child with DS are above and beyond those a typical baby can expect and therefore you need to fight even when it’s the last thing you may feel able to do. -Gill Birchall
Further reading and information:
https://www.breastfeeding.asn.au/bf-info/down
http://sunshineandtheberry.blogspot.com.au/2013/08/milos-feeding-journey.html
Growth Charts for babies with Down syndrome:
http://www.growthcharts.com/charts/DS/charts.htm
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