Our baby boy was born in July 2014 at 24 weeks gestation, weighing just 1lb 12oz. He spent his first five weeks fighting for his life in the neonatal intensive care unit (NICU) and then a further 13 weeks in special care (SCBU). They were the hardest 18 weeks of our lives.
The day he was born I woke up with some mild twinges that progressively got worse. I arrived at the hospital at midday. Forms were filled out and the midwife asked if the pain was constant or if it was coming and going. It was only then that I realised they were contractions and that I was in pre-term labour. An obstetrician was called; I was 6cm dilated. There was a mad rush to give me steroids, to help the baby’s lungs develop, and magnesium for his brain. I managed to call my husband, who had to try and arrange childcare for our other four children so he could get to the hospital as quickly as possible. For some reason I then did an online search to see if a baby could live at 24 weeks: the information I found was that there was a 50/50 chance. I had been having some gas and air and was beginning to wonder if this was all a bad dream.
The next part was all a bit of a blur but this is how I remember it. Twenty minutes after I had been given the steroids and magnesium the obstetrician told me I was fully dilated. On the fourth push my baby shot out like a wet fish onto the delivery bed and just lay there lifeless. Within a second he was scooped up by doctor and taken to the incubator that had been wheeled in, and a whole team of doctors and nurses surrounded him.
They had to resuscitate him and I remember seeing a doctor’s index finger pushing down on his chest – that was how small he was. They had to put surfactant down a tube in his throat to try and get the lungs to inflate. I think it took three attempts, and I remember the consultant telling me he may not make it and that after a certain amount of time they feel it best to stop intervening. At some point during all of this I asked one of the nurses if it was a boy or a girl as I felt a sudden need to decide on a name. This wasn’t important at that moment in time and I knew it, but it was my way of trying to normalise the situation as it was all starting to feel very overwhelming. After what seemed like an age, but was probably only about ten minutes, they managed to stabilise him. I managed to get a photo to show my husband as he had not been able to get there in time, and then our son was whisked away to the special care baby unit.
Soon after that my husband arrived and we decided on the name Henry James. We were able to go up to the SCBU to see him shortly before he had to be transferred to a Level 3 NICU around 50 miles from where we lived.
Henry was on a ventilator for the first week. I had to express milk every three hours and he started to receive this through a tube on day four. His stomach wouldn’t absorb it to begin with, but after a few days he began to tolerate it which was a huge relief. Within a week Henry had moved onto continuous positive airway pressure (CPAP), but on day eight we were told that he had a brain bleed, and by day 17 he got sepsis and had to be put on three antibiotics and back on the ventilator. They found the infection in his spinal fluid too and said it was suspected meningitis. We really thought we would lose him at this point. But he was so strong, and he fought for his life every day.
After five weeks Henry was well enough to be transferred back to our local SCBU. This marked the beginning of many milestones! After seven weeks we were told that his brain bleed was resolving, and when he was eight weeks old (32 weeks gestation) he was able to try breastfeeding for the first time. By the time he was nine weeks old he was off CPAP and onto nasal cannula oxygen, and soon after that he began to regulate his own body temperature and could finally move out of the incubator and into an open cot!
After a week totally off oxygen and 126 days in hospital Henry finally came home. He was four months old (three weeks old adjusted) and weighed 6lb 4oz. He had endured respiratory distress, sepsis, brain bleed, jaundice, weekly eye tests and ROP Stage two, anaemia requiring nine blood transfusions, daily blood tests for the first five weeks, spinal taps and x-rays and head scans. Within hours of getting home, Henry pulled his NG tube out and within two weeks was being exclusively breastfed and he began to thrive.
Henry started walking at 16 months and the only issue we have now is glue ear which is causing a slight speech delay. But we know that he will overcome this just as he has done with every other obstacle that he has faced in his short life. Every day he amazes us, he is so strong and brave; he is our little superhero.
I hope our story brings hope to other families going through this traumatic experience. My auntie, who is a nurse, gave me some great advice – to always ask the medical team if you have any questions because they can give you the most accurate information relating to your individual baby instead of believing everything you read on the internet! We are so thankful to all the staff from both of the hospitals who cared for Henry. They are truly amazing people who do an outstanding job every single day.
If you have been affected by any of the issues mentioned in this post, you can call our helpline for support on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email email@example.com
To organise a Bliss little heroes fundraising walk for little superheroes like Henry, please visit bliss.org.uk/littleheroes