Content Warning: there are images of a very sick premature baby in this video and in the photos in this blog.
Not growing as expected
I was 28weeks pregnant when we were first aware our baby wasn’t growing as he should have been. Even though the consultant couldn’t find a reason why, I suspect my unicornate uterus (half womb) and scar tissue from a previous section with my first son was likely the cause. After close monitoring, four steroid injections and resting when I could, Sam was born prematurely by caesarean section at 34 weeks at 3lb 15oz. He was well but had to stay in neonatal unit to be tube fed to stabilise sugars, temperature and have UV light treatment.
A completely different experience from my healthy first born who never left my side. That week was an emotional rollercoaster. Even though I knew he was well compared to some very sick babies, he wasn’t with me, I couldn’t hold him all the time and I had a strict regime to follow even though we were trying to establish breastfeeding.
He was a fighter, had a brilliant latch from day one and although very sleepy we did it. After a week we finally got home to his daddy, big brother and step sister, we had him all to ourselves at a tiny premature 3lb 6oz. I knew once I had him I never wanted to leave his side, I hated the separation at the start and so did he.
We started our carrying journey
We started our carrying journey with a stretchy wrap that my sister had gave us and we loved it. It was like a second womb for him where he felt close and safe. At that time little did I know what a lifesaver it would become.
Sam was very quiet and sleepy at the start and I thought brilliant, this is easy. Then came the signs of CMPA (cow’s milk protein allergy) that his older brother has just outgrown at 4years old; Colic, screaming, spotty rash, reflux, being sick and diarrhoea. The stretchy wrap got us through that. I was able to keep him close, relieve his tummy pain, l see to his brother and make dinner. So, I was dairy free again; my breastmilk was safe for him. That was ok, I did it with his big brother and there are plenty of alternatives out there now. It turned out he also had egg and soya allergy, so I had to eliminate that from my diet too.
A hospital admission
Just when I thought things were going to get better, a house call from the health visitor resulted in a hospital admission. She thought he was jaundice again and wanted him checked over. He was breathing fast, but doctors thought it was viral and that Sam was just a pale colour from being unwell. He was kept in for observation but discharged after one night. Sam was admitted again the following week for the same thing, low oxygen, breathing fast, pale complexion; possible bronchiolitis. I felt sheer panic; I had seen how sick bronchiolitis had made first son, Charlie, who was full term. He was 8weeks old and ended up in resus and on oxygen in hospital for a week. I did not want this to happen Sam, my premature baby; I didn’t want him back in neonatal unit. They sent him home again the next morning.
His skin began to peel off
Sam was still very unsettled. I couldn’t put him down. I had a saying ‘when Sam’s a yap put him in the wrap’; our stretchy wrap was the only thing that comforted him. He loved being close to me and I loved carrying him too as it made everything easier. At this stage even, his cry was changing. He started to develop a rash just before 8weeks old. The GP sent him to hospital again. They thought he had eczema and started him on steroid ointments. This didn’t help. Every 48hrs he got worse; the rash seemed to spread around his eyes, nose and mouth causing his skin to peel off. He ended up in hospital again and was started on IV antibiotics for infected eczema.
I was on my own a lot of the time as my husband was with his mum who was dying. She only had days left after suffering for 20 years with Alzheimer’s. We got out in time for the funeral. My own mum was also suffering from cancer and had months left to live. She passed away in June.
Treatment wasn’t working
After that treatment Sam became more and more sick. His face was becoming unrecognisable; he was hysterical a lot of the time, he had diarrhoea and he was feeding less. Yet again another hospital admission this time more IV antibiotics and ointments that just seem to make things worse. This time his face was starting to smell. I was worried about sepsis. This was his longest admission and a doctor finally decided what they were doing wasn’t working. He said there’s a rash associated with zinc deficiency and they took bloods. Sam’s zinc level was 1. The normal range is 8-21. And he was anaemic. He commenced zinc supplements and within 5 days the foul peeling skin all fell off.
Acrodermatitis enteropathica caused by zinc deficiency
We thought he was going to scar because of the damage, but his skin is perfect now. He had Acrodermatitis enteropathica caused by zinc deficiency. This causes irritability, peeling skin and diarrhoea. It is very rare, and the doctors hadn’t come across it before. The wrap was a life saver and helped me get through a very tough time in our lives. I couldn’t have coped without it. Becoming a mummy to 2 children both with different needs and wants has its challenges without dealing with a premature baby with AE and the deaths of our mothers .
I recommend baby carrying to everyone
I recommend baby carrying to everyone, just try it because you never know it could turn out to be a tool you can’t live without! Now Sam is well and is still on zinc supplements and has to have regular bloods to monitor his levels. We are still awaiting blood results to determine whether the zinc deficiency is genetic, and we still use our wrap but more for fun than fussy times. We even bought an Izmi carrier which he loves to explore the world in. Sam is now a happy little chappy and still loves slinging it with his mummy.