Angie + Baby T’s Story: Transitioning to BFing from a GI tube + with Hypotonia

Here is a great post from Angie about her gorgeous little boy Thomas and their incredible BFing journey despite some real complications and very stressful situations:

“Hello! I came across this great resource, and thought it might be the place to share my experience of breastfeeding a baby with hypotonia (low muscle tone) – mainly because I found it virtually impossible to get any info for my sons particular uniqueness when I was trying to breastfeed! This maybe particularly helpful to those whose babies have a GI tube and wonder whether they can transition to breast – the answer is yes you can! So here goes:

My son Thomas was born at term, after a difficult and long labour with ventouse delivery. I won’t go into the specific traumas of this itself, except to say that he wouldn’t latch on and was quickly taken to neonatal unit where we were told he had hypotonia (also known as low muscle tone or ‘floppy baby syndrome’). The underlying reasons for this can be vast, and so began a long ordeal of trying to establish an underlying cause, however once again I digress as this is not what this is about.

In the early days in NNU he was being tube fed, so I got underway with expressing, to ensure he had the all important colustrum, which felt particularly important with him being poorly. Around day 3-4 though I managed to get him to latch on, and eventually managed to establish a pattern of feeding so that by day 14 we could go home. (We were awaiting many test results still at this stage). It is important to point out that there were a few hiccups during trying to establish breastfeeding – Thomas would have coughing fits and sometimes appeared as if he maybe choking, however we had no assessment from speech and language feeding time at this time, so I was still oblivious to the potential for aspiration.

We had been home for 3 days, and Thomas was very unsettled, and had quite a noisy stridor, particularly after feeding, it was almost as if he sounded a bit wet. We decided we would take him into our A and E, given we had no diagnosis for his low tone, which meant we were ultra paranoid about what could be wrong with him anyway. This was a big mistake and things got very quickly out of hand – alhtough his blood sugars were normal, and there was no sign of anything on his chest, the A and E doctor thought it best to admit us overnight to be on the safe side. Upon admission to the ward, Thomas was forcibly removed from me and I was told under no uncertain terms that he would have to be given a course of antibiotics ‘just in case’. And no I could no longer breastfeed him, he was going to have another GI tube put down. This was devastating to me, and at 5am I sat there listening to him screaming as they forced a canula into his tiny foot.

The next day we were visited by speech and language feeding specialist, who on the basis of a five minute assessment decided that I couldn’t breast feed and the tube was staying in. What followed was probably the worst few days of my life with specialist after specialist coming in, documenting his features and looking pitifully at me whilst saying they had no idea what was wrong with Thomas.

I was determined that Thomas would have breastmilk and so expressed throughout – hoping beyong hope that I would be able to put him back on the boob at some point.

We were discharged after a week, with instructions on how to feed at home through the GI tube – which was an ordeal in itself. In the meantime my HV put me in touch with the breast feeding co ordinator for the area so I could borrow a sturdy pump for home. She was like an angel to me – she couldn’t understand how Thomas could feed one minute and not the next, and she encouraged me not to give up hope and said she would schedule a meeting with speech and language who had banned me from breastfeeding, once she had done a bit of research.

She did this and in the meantime, visited me at home suggesting different positions, and MOST crucially making sure Thomas was swaddled to enable him to focus all his energy on purely feeding. Afterwards when we were alone, Thomas was rooting and I thought I would just try him back on the breast and see what happened – I had been tempted a few times but terrified that he would aspirate and choke. Lo and behold he seemed fine.
In secret (I didn’t dare tell anybody such was my fear) I put him on the breast for longer and longer periods, until the day of the meeting with speech and language feeding expert and the breastfeeding co ordinator, where I was able to demonstrate him feeding for at least 10 minutes!

I was so proud of myself that day, and it was the first time I truly believed he would be able to get back onto being breastfed fully. It took me the best part of a month transitioning, trying to work out based on his weight etc how much to put down the GI tube depending on how much time he had spent on the breast. Then we went overnight, and finally the day came when he hadn’t anything down the tube for over a week, and the nurse came to remove it. I was delighted but also anxious. I thought what if it all goes wrong again. But thankfully we never looked back, and I am happy to tell you that Thomas is now a healthy happy three year old, who only gave up the breast earlier this year because I am expecting number 2 anytime!

Sorry for the essay, but I found it particularly hard to get any help or info on whether it was even possible to transition from a GI tube to the breast, particularly with the outlook of hypotonia with no diagnosis. So if this story does anything, I want it to give hope that it is possible, although hard work, (for me the hardest thing I ever did in my life) but the rewards are worth it and I would do it all over again as Thomas has never needed antibiotics or been poorly despite his low tone issues.”

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