Charlie was born at 27+6 wks by emergency caesarean. After having a week off work with high blood pressure, and his growth tapering off with every subsequent ultrasound, when I felt really unwell at 27 weeks I decided to go to the hospital to get checked out (even though we had an appointment the very next day.) Half expecting them to turn me away and tell me I was fine, they diagnosed severe pre-eclampsia and so the struggle began to keep Charlie inside for as long as possible.

We lasted 6 days, as I developed HELLP syndrome and it just became too dangerous a situation for both of us. Charlie was taken from me under general anaesthetic, as my platelet count dropped to unsafe levels. I didn’t get to see him until about 17hrs after his birth until I was well enough to be taken down in the bed, still on oxygen. He was the most beautiful thing I had ever seen. The whole 618grams of him. From that moment I was hooked. He was different to what I imagined. He was IUGR (growth-restricted) and his head was about the right size (22 cm) but his body was very tiny, about the size of what I imagine a 24 weeker would be. He looked starved, and I suppose its because he was. The first 4 or 5 days are a blur as I was very unwell and couldn’t visit him very often, which is just as well because it kept me ignorant of just how serious it was.

He was very sick from the very start, requiring a whole host of things in his first week including blood and platelet transfusions. He was getting antibiotics for an infection and his whole body puffed up due to all the fluid that his little veins couldn’t retain. He had a PDA and blood sugar issues. And of course, he was ventilated.

Things progressively got worse with the Doctors describing his condition as very sick, very ill, with a stricken look on their face. Ignorant as I was, I thought all premmie parents were spoken to in this way. His 2nd week brought more antibiotics to try and hold off the infection, and 2 more platelet transfusions. His fluids were restricted and he also received another blood transfusion. They could not isolate the infection and removed his central line in case it was breeding in there. So with his feeds restricted and no central line delivering nutrition he wasn’t really growing. He was too unstable to even be weighed.

This is when the damage to his skin started to become obvious. He was red raw under his neck, his bottom, in the creases of his arms. All his skin had started to dry up and peel off in big layers. A lot of the staff had never seen anything like it. Charlie became a bit of an “oh my God”. His platelets also plummeted again on Day 20, and he started to get a puffy belly and was not tolerating his feeds. The ugly possibility of NEC raised its head in my mind, but luckily I was wrong.

And then again, more Xrays as his stomach swelled again. And more antibiotics. And then day 22 brought another blood transfusion, and his feeds were stopped again. It felt like we were going nowhere. But then, things started to look a little brighter. With all his skin coming off, his infection started clearing and he started to tolerate unfortified feeds. We had our first cuddle on Day 25, but by day 27 he needed another platelet transfusion. I felt as if he must have caught something from me. The doctors assured me it was not the case.

We felt lost and desperate, like he was never going to improve. By the end of the 4th week, we were told about Chronic Lung Disease, he still had bad oedema, his weight kept dropping, this time down to 808g and I felt so sad. I remember going in on the train each morning, and sometimes I would be planning his funeral in my mind.

But then, as things sometimes do, it all started to get a bit better. By 5 weeks of age, he was finally gaining some weight and was 886g! His platelets started to increase, he had his last blood transfusion and he started to tolerate fortified milk again. It took him over 6 weeks to reach 1kg, but we were so proud of him when he did, and all of a sudden, the doctors seemed to sound more positive. And his next cardiac echo showed his PDA was getting smaller.

His weight kept gradually increasing, and he had the odd dose of antibiotics for suspected infections. Over the next month, the battle to try and get off the ventilator waged, but he was eventually re-intubated with a larger tube because he outgrew his old one. At this point we felt crushed because all his settings increased again, and I developed a cold and missed my first ever Mother’s day with him. It seemed like every time we called to check on him, he had been bagged. He earned the nickname of ˜bell-ringer’ from some of the nurses, and his blood-gases seemed to be worse. I thought he was never coming off the ventilator. Every day at lunch, I was haunted by the pictures in the hall of old babies on the ventilator still. I thought after all of this, he still wasn’t coming home. He was going to die on the thing. I was miserable. It seemed everyone else was off in Special Care trying to breastfeed their babies, and here we were still in the isolette, still getting bagged all the time.

But on day 75, Charlie decided he had enough too, and self-extubated. He lasted on normal C-PAP for 7 hrs before they gave him some ventilation as side breaths. He did so well though, he was on normal C-PAP after a week. Finally I could hear my little boy make noises! It was magical. He finally made 2kg by day 83, and all of a sudden time seemed to speed up. Before I knew it we were in Room 2, off C-PAP, having nuzzles, in an open cot, wearing clothes and getting ready for Special Care. After 102 days in Intensive Care, we were moving! I kept waiting for the bubble to burst, and some of the nurses told me to not get too excited just yet, that you never knew what could happen with ˜these chronic babies’. But he just kept going, and going and going and after 2 weeks in Special Care we were going home. No oxygen, no feeding tubes, nothing. It all seemed to happen so fast. We were so proud to take him home!

Charlie is now 28 months old, and 10 kg.  I sometimes can’t believe he is the same boy and yet he bears all the scars that prove it. He is really remarkable. In hindsight now, we know how very sick he was. Quite a few nurses and doctors have since stated or implied that they didn’t think he was going to survive. That one day they would come to work and his isolette would be empty. And that explains why whenever other new mom’s and dad’s came in the doctors just sounded so positive with them. I could never understand why they didn’t sound like that with us. Now I do. I can’t believe he survived his infection. I can’t believe he came off the ventilator. I can’t believe he is still here. We are so lucky, and I remind myself everyday!

Mandii (mummy to Charlie and more recently to Elizabeth)

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Thank you so much for sharing your amazing story.  I am so in awe of the strength and resolve you have.  What an amazing and inspiring journey you have been through… and what a special, gorgeous little Charlie.

Warmly

Elizabeth xx

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