Day 53 - What's the Alphafeto Protein?

It’s night 53 in NICU for the Berries and we are back at medical school again – studies happening largely via the internet!

Sammy unfortunately had to return to the nasal prongs to support his breathing less than a day after he came off them. He was having frequent apnoea episodes and too many associated oxygen desats. While this was disappointing, the fact that he breathed unassisted for half a day so much earlier than expected was incredibly encouraging for Mich and me and, I suspect, many of the nurses. We now know that he doesn’t need any additional oxygen - the prongs are just giving him supportive air pressure (2 litres per minute) and generally assisting his breathing response by tickling his nose. It’s this instinctive breathing response, or rather the sporadic lack thereof, that is now the specific cause for concern in his breathing.

We had another of our chats with doctor Paul yesterday. We now know that the Hyaline Membrane Disease has resolved so this is no longer causing the desats. A test of Sam’s blood on Thursday showed that something called the alphafeto protein (AFP) count in his blood is double what it should be for someone his age (32,000 vs around 16,000 – in babies older than 3 months it sits around 150 or less). When in the womb AFP binds the sex hormone estradiol to prevent it from affecting the fetal brain. It’s not known medically whether this AFP is then the cause of apnoea but either way it is an excellent indicator in young babies of their propensity to have apnoeas. The fact that Sammy’s is so high is not good news and unfortunately nothing can be done medically to reduce the count. Over the next six months it will naturally reduce to negligible levels but during that time he will be at very high risk of continuing apnoea attacks which are one of the main causes of Sudden Infant Death Syndrome (cot death). Paul has therefore suggested that he is going to be in hospital longer than originally anticipated. He wants him to go for at least a week without experiencing any apnoeas before considering him for release. He has not yet had a day without any! We continue to take things a day at time.

On the positive side, apart from the lungs Sammy is gaining weight at a rate of knots, now clocking in at 1640 grams (3.6 pounds).

Please continue to pray for our little man’s lungs, specifically an end to these apnoea episodes and a significant lowering of his AFP levels.

Thank you so much for your faithful support

Terence