It was my first child and I was enjoying a very normal pregnancy, expecting to give birth around the typical due date of 40 weeks.
Having no family history of premature births, it was a huge shock when, with little warning, Harry was born at only 24 weeks and five days. He was put him in the category of “extremely pre-term” and was quite poorly.
Most babies born following a standard pregnancy will weigh between 5lbs 8oz (2,500 grams) and 8lbs 13oz (4,000g). But Harry weighed only 1lb 14oz (870g), the equivalent of two tins of beans.
From the outset, Harry was treated for a range of complications in the Neonatal Intensive Care Unit (NICU). These included bleeds on the brain, sepsis, meningitis and a disease of the eye called Retinopathy of Prematurity (ROP). Harry also required 10 blood transfusions and a platelet transfusion.
Doctors said our son had only a 50-50 chance of survival, and that most surviving 24-week pre-terms have lasting disabilities. Because Harry’s body was effectively being used way too early, every system in his body was encountering problems. We were terrified. We didn’t know if Harry would live.
Then we were handed a life line. One of the NICU research nurses approached us about the possibility of Harry taking part in a research study called Planet-2.
Planet-2 (short for Platelets for Neonatal Transfusion 2) is a National Institute for Health Research study to improve treatments and patient outcomes.
This particular study is helping medics to better understand when to give transfusions of platelets to premature babies with low platelet counts. After being given a comprehensive explanation and assurances over his health, we agreed to Harry taking
part. The medical team were fantastic at going through all the details and allowing us to make the best possible informed decision.
We were given a lot of information and our research nurse assured us they would never put him at any increased risk and that he would be really closely monitored.
Ultimately, we kept thinking about all the children in the past who were born early; who took part in studies and helped researchers learn more about treating premature babies. Without those babies taking part in research, today’s amazing treatments wouldn’t exist and Harry simply wouldn’t be with us. I get emotional just thinking about that.
It’s nice for us to know that Harry taking part might help future families who find themselves in the same position we were in.
Harry’s condition stabilised under the care of the NICU team, and despite a dip in his platelet count at two-months-old, thankfully he didn’t require another transfusion and his overall health improved little-by-little as the weeks ticked by.
Finally, we were able to bring Harry home exactly 16 weeks after he was born.
Though initially he needed oxygen support at home for his underdeveloped lungs, Harry was taken off oxygen. Now, with his second birthday coming up in November, he weighs a healthy 27lbs. He’s making good progress and Harry’s doctors are delighted with his health.
With a birth as premature as Harry’s, it really was like a rollercoaster. At the beginning, everything was bad, but then he’d have a few good days. But we couldn’t have been in better care and since he came home we have been really well supported by Harry’s consultant and the community teams from NICU and paediatrics.
To any parents in our position considering taking part in research, we would say that Harry was very well looked after, carefully monitored, and we felt supported by the staff every step of the way.