Breastfeeding your baby with Down syndrome

Parent Stories

Reflections from other moms who shared with us their accounts of breastfeeding babies with Down syndrome:

From Nancy, sharing her breastfeeding experience as an experienced mom of 4 whose baby also had hypothyroidism

Gabby was my fourth child, and I had breastfed my other children each for at least a year. But when I was pregnant (with a baby with Down syndrome and a heart defect), I read the book Choosing Naia, and Naia’s mom had issues with breastfeeding and calories. I wanted to breastfeed, but I did not want to risk my baby’s health with insufficient calories. My cardiologist, Dr. Barghova with Children’s Hospital of Philadelphia (CHOP), urged long-term breast milk, and she and Nurse Caroline sent me to two cardiac lactation consultants at CHOP. These women talked about potential challenges and potential solutions, and I felt very ready for this aspect of Gabby’s infancy.

Gabby was born with a tongue thrust (pushing the tongue out strongly) and hypothyroidism (ironically from my antibodies, not from Down syndrome), which in addition to Down syndrome and a heart defect, led to an inability to breastfeed. My LCs had prepared me for this possibility, and we had already talked about the use of a pump. I pumped starting two hours after delivery, and after some attempts, resigned myself to long-term pumping. We added powdered formula directly to the breast milk at a specific ratio so that Gabby received extra calories.

At eight weeks of age, the antibodies I had given Gabby that caused hypothyroidism died off, and, on the medication, Gabby suddenly became hyperthyroid and extremely hungry. So out of the blue she just started nursing. Eventually she refused bottles and continued to nurse until she was over two years old.

For us, the preparation and planning helped enormously, but we also had a big stroke of luck.

From Kelley, who received a post-natal diagnosis 10 days after birth and resolved challenges with milk supply

My daughter wasn’t diagnosed with DS until 10 days old so I’d already established breastfeeding before knowing it might be a special challenge.

My birth doula and the hospital lactation consultant gave me some general advice and, as she had good tone, she managed to nurse. The problem was she was not waking to nurse. We were told to wake her, but that was pretty impossible. I just kept doing my best (with support of family and doulas) and exclusively breastfed without too much difficulty.

At 3 months, she seemed to be less and less satisfied, and my milk supply seemed to be going down. I did breast compressions but she then seemed to be sucking less hard and it was a downward spiral. At 4 months, I decided to supplement formula once a day.

I was then able to be prescribed Domperidone (not in USA) to improve my milk supply. So at 5 months, we were back to exclusive breastfeed again, and I was able to relax. At 6 months she was feeding great and starting other foods.

As it worked out, our story is not so dissimilar from other friends with typical babies. In my opinion the things that helped were:

1. a healthy strong baby (remember some babies with DS are like this!)
2. a gentle, happy birth that meant easy bonding and mother confidence, leading to my milk coming in easily (not always possible but a goal to strive for)
3. a small network of doulas with lactation experience and experienced moms that were able to give advice and encouragement and listen to my concerns.

From Stephanie, describing how she struggled with breastfeeding and found perspective

I worked very hard to nurse my first son with Down syndrome and ended up pumping because I had some anatomy problems and was inexperienced. Preparation and relaxation would have done wonders for me. The main point is to enjoy being a mom without putting so much pressure on yourself. Breastfeeding is a wonderful experience, but you can still have a strong bond, a healthy child, and a happy experience with your baby whatever the outcome.

From Kathleen, explaining how she progressed from tube feeding to breastfeeding after a stay in the NICU

Amélie was born 8 weeks premature. She was in the NICU for almost 6 weeks, and I was pumping the whole time. We went from tube feeding to bottle and occasionally tried nursing. In order to get out of the NICU before she turned twenty, we focused more on her taking the bottle so we knew what she was taking. Once she was out of the hospital, I worked on nursing again. It wasn’t going well, so I called in a lactation consultant and she got us on the right track. We used a shield for a while so Amélie could latch on and control the flow. As her strength grew, she weaned herself off the shield. I ended up nursing her for about 21 months. I hadn’t planned to nurse that long, but she was not a big drinker, and it just worked for us. She eventually let me know she wasn’t interested and we moved on.

From Laura, telling about how her baby learned to latch after a couple of months of pumping and then breastfed until 3-years-old

I was fortunate to have quite a good nursing experience with my daughter. I did not have the preparation time that those with a prenatal diagnosis would; however, I was blessed with a wonderful wise old lactation consultant who was as determined as I was that my daughter would breastfeed. My daughter had a good latch and nursed well, with the only problem being that she was fairly sleepy for the first couple of months. I used something similar to an SNS, and was able to pump to keep my milk supply up until she was able to breastfeed with no assistance.

I had planned to breastfeed until she was two, however I somehow find myself nursing a 3 year old! She only nurses every couple of days now, but I am convinced of the long-term benefits of breastfeeding. Because she was able to nurse, my daughter has always had good oral tone, and I’m sure it has helped her immunity as she does not get a lot of colds and has only ever had one ear infection. This has resulted in her having very good speech for her age. For those babies getting pumped milk, the benefits are also amazing.

From Sarah, whose son breastfed almost a year with only a few complications at 3 months

I had no preparation for this since my son wasn’t diagnosed with Down syndrome until an hour after birth. I had breastfed my daughter successfully so that gave me some confidence, and we were successful. Adam needed extra help learning to latch on for the first few days but then did great. The only issues we had were that he seemed to have diminished appetite followed by slowed growth at about 3 months, but we worked through that with some help. He’s 14 now and nobody would ever guess he had growth concerns as an infant! He nursed consistently until 11 months when he quit cold-turkey. That hadn’t been my plan but it sure was his.

From Susanna, giving a detailed account of how she successfully taught her daughter to nurse months after birth using a nipple shield and SNS

Our breastfeeding journey was complicated by the fact that our daughter had a heart defect (complete AV canal) which caused very low energy levels. Plus, she had low tone and excessive sleepiness caused by Down syndrome. She only latched on and nursed a handful of times in her first week and a half, so I pumped and used a syringe and pinky finger to feed her.

Then, beginning at 12 days old, she began a pattern of going into heart failure over and over, receiving increased dosages of meds each time. That affected her eating even more, and, when she wasn’t able to get enough even by bottle, she received a naso-gastric tube at 3 weeks.

Two weeks later, she was no longer taking anything by mouth, and her breathing had become labored. Her heart repair became an urgent necessity, and our biggest emotion at surgery time was relief!

She was in the hospital for 9 days, and came home still with the NG tube. She very gradually increased her strength with bottle feeding over the next month until her pediatrician gave permission to pull the tube.

She was then two months old and taking 1 to 1 1/2 hours to take a 3 ounce bottle. Over the next 2 1/2 months, she gradually grew stronger and faster until she was taking a 5 to 7 ounce bottle in about half an hour, and I thought she was ready to work at nursing.

She would have nothing to do with that idea, and fought the slightest move I made to attempt it. She did nurse one time while she was asleep, so I knew she was physically capable of doing it.

I got permission from her pediatrician to go off bottles cold turkey, and see what would happen. I tried all sorts of ideas that day and was getting to the point of thinking we’d soon have to give in and feed her something, when at 10:30 or so at night, she finally relaxed, stopped crying, and started nursing!

What finally worked, besides persistence and in my opinion, a miracle, was to swaddle her in a flexed position and use an SNS and nipple shield combo. I put the SNS tube under the nipple shield.

She started out slowly with the nursing, back to taking an hour to drink 3 ounces, but quickly increased her proficiency, so that a week into this, she is getting 5 ounces in half an hour, with the help of me squeezing the SNS bottle at regular intervals. I hope to wean her off these tools eventually.

Without the support of my husband, I would have given up. It really seemed so impossible, with her history and aversions. It also would not have worked if my body had not cooperated with exclusive pumping, but I have so much extra milk that it’s totally supporting a friend’s baby.

So when I look down at her sweet fuzzy head nodding up and down as she drinks my milk from my body, I think surely no other mother could be more profoundly grateful. I would do it all over again to give her the benefits she will get from working those oro-facial muscles. And believe me, I will not be weaning this child even if she nurses until she is 5 years old!

From Angela, describing how she taught her second son to breastfeed with support and relatively few complications in the NICU

I always knew that I wanted to breastfeed my babies. When my younger son was born, I suspected he had Down syndrome. However, it wasn’t confirmed until he was 10 days old. He could not latch immediately after birth due to a respiratory infection. I continued to pump, but in the hopes that we could give it a go at a later time.

When he was three days old, we were blessed to have a fantastic traveling nurse as his care provider for the day (in the NICU). She spent a good 45 minutes with me – making me comfortable, positioning my son to latch, and talking me through the process. Although I’d nursed my older son for a year, the prospect of nursing a baby in the NICU while connected to lines and monitors was daunting. Thankfully, he latched and we never looked back! He actually nursed better than his older brother! (At this point, neither my husband or I knew that babies with Down syndrome sometimes have challenges when nursing.)

My son nursed for 9 months; I just recently weaned him due to my own supply issues. He could have happily nursed well into his second year had I been able to provide enough milk for him. He’s always had a fantastic latch and no obvious signs of low oral muscle tone.

From Maggie, explaining how she prepared prenatally for a successful breastfeeding experience but struggled with her milk “coming in”

We knew ahead of time that our daughter would have Down syndrome, so I talked to a lactation consultant about special challenges we might face breastfeeding. I felt well prepared. Emlyn was born with a very strong suck, but a poor suck/swallow pattern. It didn’t matter — I had no milk for over a week! My colostrum was not really flowing either — my body just would not produce. It was terrible. She ended up needing NICU care, and they supplemented her with formula. I was so upset but she needed food, and I had nothing to offer.

I pumped and pumped and put her on the breast as much as I could and I still produced almost nothing. I fed her what little came out with a bottle.

On day 10 (at home), I was beyond frustrated and teary. My husband found Kellymom.com (a godsend!!) and learned about “nurse ins” — basically you get into bed, have lots of skin to skin contact with your baby and nurse and nurse and nurse for a whole weekend to get a relationship established. It was hard, but it worked! We literally didn’t leave the bed – I even got served meals there. After 2.5 days, Emlyn “got it” and my body kicked in and we nursed like champs! In fact, she decided she never wanted the bottle again and never would take it (a terrible thing – I couldn’t leave for more than a few hours!) When my milk came in, it really came in – I could’ve fed triplets.

Emlyn nursed until she was almost 18 months old when she quit cold turkey (she bit me and I cried one day – must have scared her because she never came back!) We tried for a few weeks but she wasn’t interested. She’d been on homemade baby food for a while, so she was fine eating other things, but I was very sad to end our breastfeeding relationship then. She wasn’t — she never looked back

From Karyn, describing how her daughter struggled to breastfeed after heart surgery and how she pumped for 6 months and now has a healthy, thriving 5-year-old

I was planning to breastfeed my daughter with Down syndrome because I breastfed my other 3 children. She was in the NICU for 3 weeks after birth because of her heart condition, and she never really took to breastfeeding. Because of her heart condition she barely woke at all so it was very hard to try and persevere. She would suck but would run out of energy long before she could have got enough.

I pumped for her and she was tube fed. I still put her on the breast but the nurses convinced me that it wouldn’t work. I continued pumping for 6 months and kept tube feeding her at home with calories added.

I thought that after her heart surgery she might breastfeed, but she never did. I was very upset and felt like a failure but the truth was that she got breastmilk for 6 months anyway.

I still think that if I had persevered she may have taken to it down the track. She is 5 now and wonderfully healthy and active so really it is just me second guessing my decision.

I would encourage anyone who wants to breastfeed to persevere but if it doesn’t work out it isn’t the end of the world. She is now a healthy, happy, energetic 5 year old with a good appetite, and she is thriving.

From Patti, explaining how her daughter learned to nurse after 4 months

Lily struggled for the first few months to nurse. However, with lots of patience (and prayer!) she finally “got it” at 4 months old. The thing that helped me persevere was a doctor at a children’s hospital assuring me that she would eventually nurse if I stuck with it. Today she refuses to take anything but the breast!

From Aimee, describing how she breastfed until returning to work

Ethan didn’t have any problems breastfeeding at first, but when I went back to work he had trouble switching back and forth between breast and bottle. I ended up having to stop because it became very hard on him. I pumped and fed him the breast milk strictly from the bottle but then had production problems. I breastfed my other children and think this helped (knowing how to breastfeed).

From Lulu, talking about how she nursed her son during a NICU stay and how she supplemented with a bottle of pumped breastmilk or formula to compensate for his difficulty nursing

At my 18 weeks ultrasound we got the two soft markers but then one soft marker (bright spot on the heart) was gone, so my obstetrician never mentioned that again.

My son was born at 37 weeks. He got into NICU right away because of low glucose but then there were a lot of health complication that came up. The team doctor did the genetic check, and we got the result when he was three days old.

He latched on right away but he preferred one side. He got formula from the nurses at the NICU, but I kept pumping and kept bringing breastmilk to give him. I really think that it helped him a lot to recover quickly. And it made me bond with him faster.

He kept trying to breastfeed, but it would take him 45 minutes to an hour to nurse. I kept pumping to make sure he got enough milk to eat. I let him nursed for 30 minutes and gave him more by bottle. When he was 3 months old he got the strength to nurse faster. For some reason, he weaned himself at 5 months old. But I still gave him breastmilk exclusively until he was 8 months old then started to supplement with formula. It was a struggle for me to pump all that long, but it’s all worth it.

From Sherri, describing how she struggled to nurse even after breastfeeding 3 previous children but was ultimately able to nurse for over a year

Our daughter was our 4th child, so we were experienced with breastfeeding. I took for granted that we would be nursing pros, but it ended up being an issue that kept us on our toes. She started oral motor therapy at two weeks old, and we worked very hard at nursing/pumping/and supplementing. I had nursed our other 3 for 18 months and tried very hard to nurse/provide her with breastmilk for as long as possible. I ended up on antibiotics when she was 13 months old and that did my supply in, but I’m proud that I did what I could that for that period of time and believe the health benefits can only benefit children with Down syndrome and strengthen the mother/child bond.

From Meggie, talking about how she experienced difficulties trying to nurse and pumped breastmilk for 6 months

Brigid spent two weeks in the NICU when she was born two weeks early. She had an ASD and also couldn’t get her blood oxygen up. She wouldn’t nurse, so on Day 3 we made the decision with her medical team to put her on a nasal feeding tube. I started pumping immediately and kept trying to nurse, but she just wouldn’t latch on, and my anxiety and blood pressure went through the roof. Having nursed my older children successfully, I was very upset. She was able to get off the feeding tube by her due date and come home, but still wouldn’t nurse. So I pumped and gave her bottles — eventually supplementing with formula for 6 months. Brigid never had a problem with food or formula and has been the healthiest of my 3 kids. Best bonus was that my husband could take nighttime feedings, and we figured out that she really wasn’t eating much at about 6 weeks so we let her fuss a bit and she started sleeping through the night at that point. My older kids were four before that happened! Silver linings abound!

From Sue, explaining how she used a few tricks to encourage her fourth child to nurse

Our story is a breastfeeding success story. We didn’t find out until after birth that he might have Down syndrome, so I never knew that he might have problems with nursing. In the beginning he was very sleepy and needed encouragement to latch on. After the milk came in, he would have trouble with the letdown management. I often pumped a little before nursing especially if I was engorged. I also developed this trick of holding my finger under his lower lip to encourage better latch.

Jake was my fourth baby, and I was an experienced nurser. I never had to consult a lactation consultant but did use every trick I had learned and did develop some new ones. He nursed a little slower than some of my others but got the job done. He was a big baby. He nursed until he was 16 months old. We were able to bottle feed when necessary as well.

From Ilisa, describing how her third child learned to nurse at about four months, after a stay in the NICU and surgery

Calvin is my third. I had an in utero diagnosis of Down syndrome and complete AV canal defect (CAVC). I was told a few times throughout my pregnancy that I should expect difficulty nursing Calvin. Most of the naysayers were in the medical field. Some were positive, including other parents, but none who also had children with the CAVC. I was heartbroken when Calvin was born and spent 16 days in the NICU and did not nurse. In fact, he was aspirating (breathing in his food), so I had to thicken foods. So, I pumped and thickened bottles for four months, when he had his surgery. I did not give up my desire to nurse. I worked with my dentist to perform oral stimulation and muscle work/releases. I kept trying to have him latch on.

At about two months I quit trying. I was stressed. I pumped and waited a few weeks. When he was about three months I tried latching him on, and he did for just about two minutes, but I knew that meant a lot! So, I kept trying, and he would stay latched on longer and longer. I pumped, gave him a thickened bottle, then latched him on a couple of times per day, usually before he went to nap/bed. After surgery, we did another swallow study and he passed, no more aspirating! So, I ran with it. When Calvin was nine days post op, four months old, I put the bottles away, and he has been nursing since! I weighed him before and after feedings to monitor his intake. He does not nurse as efficiently as my others. I have a blanket for drips, and it takes a bit longer, but he is gaining weight and is happy. So am I! I am just happy to be an inspiration, or rather Calvin be an inspiration.

From Megan, talking about how she supplemented and fed at the breast while working

For the first 2.5 weeks Ellie was on IV nutrition. I pumped and bottlefed after that. We tried breastfeeding, tried the nipple shield. The lactation consultant thought she’d get it in time. For the first 3 months I mostly pumped. I went back to work for 8 weeks when Ellie was 8 weeks old. Once I was there, my supply dropped. At 4 months, I no longer pump!! Ellie takes half her feeds at the breast and half formula… my body can’t keep up with her appetite!

From Dawn, describing her experience as a labor and delivery nurse and mother of a daughter with Down syndrome and the specific methods she used to establish a breastfeeding relationship with her baby who had cardiac issues and weight loss problems

We knew that Fi most likely would be born with Down syndrome — and received the confirmation when she was born. I am a labor and delivery RN with certificates in breastfeeding, so I felt determined that this child would nurse. She was so sleepy! She was awake for a short time after her cesaerean birth at 36 weeks and showed a little interest in nursing, but would not maintain a latch. I began pumping immediately and finger feeding her. The entire process was tiring, but very important to me.

She had issues with low temp and low blood sugars, so I pumped and fed her vigorously to avoid further complications. After 4 days of attempting, I was able to get her to latch in football hold with a nipple shield. The shield made it easier for her to maintain a latch due to her low tone.

I continued to pump after feedings since she would only nurse for a max of about 10-15 minutes with a lot of prodding and poking by me. I set my alarm for every 3 hours because she never woke for a feeding.

At two weeks of age we learned about her cardiac defect, and this explained her steady weight loss. She was 5lbs 11oz at birth, and by two weeks of age had finally just regained her birth weight after only dropping to 5lbs 8oz. So, the math: she only lost 3oz, but took 2 weeks to gain it back. She was put on [the medication] lasix the day of her cardiac diagnosis (a Friday) and by Monday’s weigh in had lost another 5.5oz. The plan was to weigh her again in 2 days, and if she had continued to lose, she would be hospitalized. I went home that Monday night and cried as I nursed her for the last time. It was becoming more and more difficult to get her to wake. She was literally like a wet rag. She would just lay there, naked but for a diaper, and I could not wake her. She had zero energy. That night I began to pump full time and supplement her breastmilk with Human Milk Fortifier. I had my husband give her the first bottle. It took 45 minutes, but she finally took 2oz. Over the next 4 months until her cardiac repair, feeding was a daily struggle. As much as I hated to pump, I felt very gratified knowing I was doing as much as I could. Then, after her heart was fixed, holy cow, I couldn’t feed her enough!

At my peak, I was pumping up to an extra 40oz a day on top of what she was consuming. I stopped pumping and had enough milk in the freezer to last her through her first birthday when we switched to formula for a few months and then Kefir, which she’s still drinking at 21 months.

So, long story short, it was a lot of work, but so worth it to me for her to have breastmilk.

From Erin, who ultimately succeeded at breastfeeding after pumping for four months and using nipple shields

After my typical son had to use nipple shields and pumping to get his milk for six months, I gave up and switched to formula. So I was so determined to have our second son breastfeed. When we learned the news that he would have Down syndrome, so much research pointed towards low tone and low success rates in breastfeeding. This brought on a challenge to me. For the first four months I pumped and attempted latching until one day he decided he was ready. It was awesome! No nipple shields, no more pumping, and it’s been 13 months since that 4 month latch on mark, and he is a happily growing breast fed baby! It is amazing!

From Mindi, explaining how she ultimately chose to bottlefeed after numerous complications and bouts of depression made breastfeeding difficult

I had a lot of trouble breastfeeding my oldest (who doesn’t have Down syndrome). I didn’t produce enough milk; I thought it was incredibly painful (when he cried in hunger, I — literally — cried in dread). I suffered through for 6 weeks, and it suddenly improved. I loved nursing and did it for 6 months until work got in the way. So, when I was pregnant for the second time, I was confident that I would be able to nurse with no problems! Then he arrived 6 weeks early, and when he was 5 days old, we found out that he had Down syndrome. I was still confident that, after what I had been through with my first, I could do it. But, he struggled with low tone and with coordinating his swallowing, I struggled to find time to spend with him and my oldest while still pumping as frequently as I needed to; I struggled with depression; and I had the same old issues with low production which were made worse without having a nursing baby. After 3 weeks, our pediatrician said that he probably would not ever nurse … 4 weeks, our Down syndrome clinic nurse told me that I tried hard enough and shouldn’t feel bad if I wanted to quit … 5 weeks, my husband said that if I wanted to continue pumping I would need to clean the gear myself. And that was the end of my support. I tried with minimal success for the reminder of my maternity leave (until he was 3 months old) and then decided that for my own sanity I needed to give up. It was a really hard decision. I know that it was the best decision for everyone, but I still wish that I could have succeeded.

From Heather, talking about how her son latched on and nursed right away

My son Kelly was born at home and put to the breast within minutes of birth. He took to nursing well right away.

I think putting a baby to the breast straightaway is enormously helpful to establishing a good nursing relationship. That said, there are times when separation cannot be avoided and there are real physiological complications that can create hurdles to breastfeeding. But if at all possible, get your baby latching as soon as possible after birth.

And relax! Nursing should be a pleasurable experience for mom and baby.

From Kerry, explaining how she pumped for nearly 6 months after a difficult NICU stay

I fully planned on breastfeeding Ty before he was born, though that plan was altered a little bit after he was born! We received his Ds diagnosis at birth, and due to that, along with some medical concerns, he was in the special care nursery for 6 days after he was born. Even though he was full term, they treated him like a preemie, and monitored every milliliter of milk that he took. All of the nurses encouraged me to breastfeed, but I felt the pressure of time constraints within which he had to fully latch on and eat a certain amount, or he would need a feeding tube. It was not an ideal situation! I ended up quitting trying to feed him while he was in the hospital, and pumped religiously instead.

When he came home from the hospital, I was so careful about how much milk he was getting (even though he was gaining weight just fine!), that I decided to exclusively pump. I rented a hospital grade pump to “maximize my potential”, and pumped every 2-3 hours around the clock until my supply was established. It was exhausting, but I actually enjoyed being able to share the feeding responsibility with my husband.

My supply dropped a bit when I returned to work, but I continued to pump throughout the day. I ended up giving him one formula bottle a day at daycare to lessen the pressure of having to produce enough milk, and that worked out fine.

When Ty was 3 months old, I wanted to try actually breastfeeding again. I gave it one week of having him latch on when we were home, and he actually did it. I could tell he got frustrated when the flow started to slow down though, and I felt bad trying to change what he was used to, so I ultimately went back to pumping. I found out it IS possible to try latching on later, though!

I pumped for 5 1/2 months, until I returned to school as a teacher in the fall. He was just starting solids, and I felt like it was a good time to transition to all formula. While I was proud that I pumped for as long as I did, if I could do it again, I would have really made more of an effort to get him to latch from the start…I’m sure he could have done it. It’s a personal decision for everyone though, and you’ll quickly find out what is right for you!

From Kirsten, describing how she also breastfed her baby with Down syndrome fairly easily despite being in the NICU and her baby using oxygen

I was able to breastfeed Ellie very easily, still do! She was in the NICU for oxygenation issues for 2 days and I nursed her there and supplemented a bit with formula. After that, she’s only ever been breastfed. I honestly never thought of doing it any other way, even after we were told she could have Down syndrome (at birth, confirmed a week later). She’s done very well. My bigger concern is that she likes it so much I may have trouble weaning her!

From Tricia, talking about how she breastfed her baby with Down syndrome for nearly a year with few complications and appreciated the bonding experience

My daughter was successfully breastfed until around 13 months, when she stopped on her own. When she was first born, I nursed her just as I had with my other two babies. She latched on great. Later, a couple of the nurses mentioned that sometimes babies with Ds have a hard time with nursing, but I’m glad they didn’t mention that earlier, or it may have just psyched me out. She did get tired and fall asleep while nursing, and I would have to stop and wake her up, and usually switch sides in the process. I also pumped, in order to supplement extra milk. Since my daughter was in mild heart failure at that time, she would sometimes have trouble with swallowing and breathing, but we were able to continue breastfeeding.

In the early days after her birth, I was so grateful for the extra bonding experience. I worried that I would have trouble bonding after the surprise diagnosis, and breasfeeding helped with that. Also in those early days of feeling so out of control, it gave me something that I could control. I could stick to a nursing schedule. I could pump. I could give her something that was only from me. It was my third time breastfeeding, so I had the benefit of experience. If it is your first time, don’t hesitate to call the hospital and talk to a lactation consultant. Take the breastfeeding class if it is offered. And ask moms who have been successful. There are challenges, and it can be difficult. It is not the most comfortable thing for the first week or so, but if you hang in there past that, it gets easier. I would always encourage a new mom to try and stick with it as long as she can. But sometimes there are also circumstances where it’s just not possible, and that’s okay too.

From Leah, explaining how she established a breastfeeding relationship after heart surgery and an NG tube

Breastfeeding is something that I had always assumed would be a part of my life with my child. When Cora was born and diagnosed with Down syndrome and a complete AV canal heart defect, she was already in heart failure. She was kept in the NICU for almost 3 weeks mostly trying to learn to feed. I was told by all the doctors, nurses and therapists that breastfeeding would probably be too hard for her, so we focused on bottle feeding mostly, with breastfeeding practice daily. But she couldn’t even drink enough by bottle, so we had to fortify my expressed breast milk with formula, and add extra fat skimmed from reserved breast milk. Even then she couldn’t take enough, so after fighting the doctors, we took her home with an NG (nasogastric) feeding tube. Within a week of being at home she was off the tube and drinking from a bottle pretty well. But it was never easy. A few weeks later, her heart failure got much worse and she got the NG tube back. She would sweat from head to toe just trying to bottle feed 1/2 ounce. She also had heart failure induced reflux that caused round the clock gagging, wretching, heaving, and vomiting (every few minutes) that would leave her exhausted. She had her open heart surgery just before turning 12 weeks old and was in serious heart failure at the time. It was a perfect repair, and she recovered quickly with no complications. She was able to bottle feed her “quota” successfully within just a couple of days, and her horrible reflux was gone too. 1-1/2 weeks after surgery she started breastfeeding. She refused a bottle within a couple of days. She’s still nursing like a champ at 16 months and shows no signs of wanting to wean any time soon. And I am not interested in giving up something that was so hard to accomplish and that provides so many benefits.

My advice is to keep trying. I know that it doesn’t happen for everyone, but I am so glad that it happened for us.

Interestingly, since those early months I have learned that the American Heart Association says that breastfeeding is actually easier than bottle feeding for babies with congenital heart defects. I found it sad that so many medical professionals advised me otherwise.

From Jess, describing how she pumped for two months through multiple complications and ultimately decided to bottlefeed

Since my little girl had both Down Syndrome and a congenital heart defect, nursing was not successful for us. She got very fatigued, and I had difficulty building an adequate milk supply. I tried pumping for about 2 months, and still was unable to build an adequate milk supply. So my advice would be if it doesn’t work out, don’t beat yourself up. It’s okay to give formula if all else fails.

From Linnea, describing her experience pumping until her son with Down syndrome began to latch on at 6 weeks

I nursed my first child for two years and she refused to ever take a bottle. I just assumed my next one would nurse as easily, even though I knew he would have some possible issues. My 2nd child is 6 weeks old and has Down syndrome. He spent the first 3 weeks in the NICU due to an infection and feeding issues. He did latch on at first but would struggle for 10 or 15 min and not get any milk, even though I have a ton. They said he was “chomping” instead of pulling the milk in and that it was due to his low tone. He was losing weight, and we started monitoring every bit of milk he got, as well as fortifying the breast milk with formula for added calories. I have been exclusively pumping, and we try the breast every day. Mostly he either gets really frustrated when I try to get him to latch, or he doesn’t make any attempt at all. Once in a while he will latch on for a few seconds or maybe a minute and then gets mad. The other day he actually latched on and I could see him swallowing, and it lasted about 5 minutes. I was actually just about to a point of feeling like giving up on trying, but that little session has given me hope that maybe he can do this.