I was told my son may not be able to breastfeed due to his complex medical needs

As a doctor I always knew I wanted to breastfeed for all the benefits it offered both me and my baby. What I wasn’t prepared for was how much it meant to me once my baby arrived. I had been told my son may not be able to breastfeed due to his complex medical needs and that ‘fed was best’ but I was desperate to try breastfeeding.

We got an unexpected diagnosis at the 20 weeks scan

We had a very difficult first pregnancy, and at our 20 week scan, our baby was diagnosed with an exomphalos and congenital heart defects. An amniocentesis the following week confirmed DiGeorge syndrome.

At this point anything that I had ‘wanted’ took a backseat. I was willing to do whatever this little baby needed – if it meant an elective caesarean or tube feeding or a long hospital stay or travelling for heart surgery then that’s just how it had to be.

I was willing to do whatever this little baby needed – if it meant an elective caesarean or tube feeding or a long hospital stay or travelling for heart surgery then that’s just how it had to be.

I stopped thinking about anything that I wanted – I didn’t even have a birth plan! Thankfully, in the end, I went into spontaneous labour on my planned induction date, had a fairly fast (for a first baby) normal delivery with no interventions. 

I was told my son probably wouldn’t be able to breastfeed

At an antenatal appointment I had mentioned that I wanted to breastfeed if possible to the surgical team. I was told that he probably wouldn’t be able to breastfeed and to remember that fed was best. Looking back on this I’m frustrated and disappointed at the lack of support or discussion around this, but at the time I had so many other worries that I was sort of okay with that. However, once Reuben was here, I was desperate to breastfeed. It felt like it was the one thing I could do for him when I felt otherwise so helpless. 

He was fasted and fed via a central line for the first few days until he had a CT scan to look at his heart in more detail and then he was fed expressed breastmilk through an NG tube. I had known in advance Reuben would be tube fed at least initially so I had spent the last 2 weeks of my pregnancy religiously harvesting colostrum and had gathered about 200mls together.

Every 2-3 hours I hand expressed for his feeds

I had gotten a quick cuddle after delivery once the paediatric team had assessed Reuben but it would be another 24 hours before I got to do skin to skin again with him and it was 5 more days until we could try breastfeeding. Until then I hand expressed every 2-3hours and then used a hospital pump once my milk came in. I tried to do this beside his incubator as much as possible but when I couldn’t I looked at videos and photos & held the little bonding square that we swapped each day.

I was thrilled when the doctors said that I could put him to the breast but disappointment quickly followed. I thought I knew what I was supposed to do- keeping his little body in line, nose to nipple, hands either side of the breast etc, but doing it with all the lines he had in, the oxygen, the wound on his tummy from surgery…it was all just a lot more difficult.

Reuben was so keen to feed, but he didn’t seem to be able to latch even when he got into the right position. I felt totally clueless and had lost the help of the midwives as we were now on a paediatric ward. 

Reuben was so keen to feed, but he didn’t seem to be able to latch even when he got into the right position.

In my head all I could hear was the words of the surgeon who told me he probably wouldn’t be able to breastfeed due to his cardiac problems and other potential issues in DiGeorge syndrome. 

The infant feeding lead came to see us

Thankfully the wonderful infant feeding lead came to see us and immediately realised that we needed the help of nipple shields and then we were flying! It was so reassuring to speak to someone so encouraging and who genuinely wanted to help me achieve my feeding goals. I still remember the incredible feeling the first time he latched on and fed, I was delighted and totally in awe of this tiny baby that after all he’d been through, still just knew what to do as soon as he was given the opportunity.

I still remember the incredible feeling the first time he latched on and fed, I was delighted and totally in awe of this tiny baby that after all he’d been through, still just knew what to do as soon as he was given the opportunity.

Transitioning from a set amount of mls however every 3 hours to responsively breastfeeding was a whole other challenge to get my head around. 

Once we were discharged home, my confidence in breastfeeding plummeted

We were discharged a few days later but 24 hours after we got home it all fell apart again. He had been screaming for hours, he wouldn’t latch, I didn’t know what was wrong. I had lots of expressed milk still so my partner made him a bottle and he downed it. I was in pieces. He was starving and I hadn’t realised, and I didn’t know how it had happened. I decided that no matter how much I wanted to breastfeed I couldn’t let that happen again and my confidence was non-existent. So we switched back to exclusively pumping and bottles.

What I hadn’t counted on was how much I wanted to directly feed him. I knew we could do it- I held onto the fact that we had done for several days so I knew we could do it again. With the help of the infant feeding team again we came up with a plan to try one or two breastfeeds a day and then gradually increase that as my confidence grew. I had a wonderful health visitor who came out weekly to weigh him so I knew he was gaining weight and by 4 weeks old we finally got back to exclusively breastfeeding and have never looked back since.

In hindsight Reuben probably hadn’t been actively feeding as much as he was sleepy after all he had been through and I had been so exhausted myself I hadn’t noticed.

Breastfeeding a baby with complex medical needs has been tough but it saved my mental health

We have had a few challenges since. I had mastitis a couple of times as I tried to work out how to reduce the pumping while I increased directly feeding and for a while I had a very fussy baby who only really wanted to be fed in one position – on a feeding pillow. Not ideal for feeding out and about!

Reuben is now 10 months (with no plans on stopping anytime soon) and all of that is a distant memory now, and at 6 months we managed to get rid of the nipple shields too which I never thought would happen! 

At 6 months we managed to get rid of the nipple shields which I never thought would happen! 

It is absolutely the best thing I have ever done and I genuinely feel like it saved my mental health during a really difficult time. Reuben has ongoing medical problems and I’ve been able to comfort him through breastfeeding when he has needed bloods, cannulas & echos. More recently his immune system has not been working properly, not ideal with an ongoing pandemic but I am comforted by the fact that I can continue to provide him with antibodies.