Early 2009 Finn was born full term via caesarean section. Within the hour of his birth he started grunting and turning blue so he was immediately taken from us and put into ICU for investigation. With little information from the medical team, the first time we saw him after he was taken, was Finn in an incubator on mechanical ventilation. It was awful seeing him like this and it broke our heart instantly. He was only 5 hours old. It hit like a brick and instantly we knew we were not prepared mentally or physically for the road ahead. The ICU team explained that they needed to give Finn surfactant as when he was born via c-section, his lungs burst (pneumothorax) and this was one way to close the lungs over. The medical professionals told us to prepare for the worst.
Finn’s case was unusual. He was full term so whatever was going on with his lungs was certainly not normal. He was presenting as a premature baby where their lungs are underdeveloped and so may be prone to these complications. We waited a day or two and x-ray results came back that the surfactant had worked; it had blocked up the pneumothorax holes and his lungs had started to heal. Over the period of a week we found Finn started to become alert. He was fed via a naso-gastric tube and it was nice to learn to feed him and stroke his feet whilst he was in the incubator. We would sit there singing to him, watching him, or read to him. It was very hard as we had two other children at home but every moment we could, we were there for Finn.
Afer two weeks in ICU he was transferred to High Dependancy Unit. This was a relief as we started to come around to the fact that maybe Finn was going to be OK. Maybe he wasn’t going to die like the Doctors expected? Then after a week in High Dependancy he was transferred over into the General Ward with news that we could take him home. All Finn needed was a bit of oxygen and so we very excitiedly, started to get our home prepared with medical equipment and supplies.
You cannot imagine the feelings we had bringing him home. We so longed for Finn to experience the closeness of our family, the smells of the house and it’s voices and noises. We had a lot of bonding to catch up on and were so very excited. What happened was a different story. When we got Finn home, something was not quite right. He refused feeds and if we could get feeds down him, he would bring it right back up (and maybe more!). We slept on the couch in shifts, waking every two hours to feed him; hoping Finn would keep his bottle down. Looking back, the bottle was too much hard work for him. Having to suck, breathe and swallow in a co-ordinated manner was difficult. After 4 weeks of this and seeing Finn so gaunt and so skinny with barely having energy to cry, at a chance consultant review appointment, we were told that Finn was still very poorly and he would have to be readmitted to hospital. Our hearts sank; it was not over.
This time more testing was done. X-rays, CT scans, blood tests, and also reinserting the naso-gastric tube. For 4 weeks he stayed as an inpatient with the investigations and the doctors wanted to see Finn’s lungs stabilise and grow with the high calorie milks he was given. We left the hospital still with no answers to why Finn was poorly.
We started to cope a bit more better at home with the supplemental tube feeding and oxygen. The vomiting was still a large issue and Finn was given reflux medication and domperidone to help his digestive tract. One thing we did notice also, was that Finn’s oxygen requirements were increasing. He started off at 0.1lpm but by the age of 3 months he was 0.5lpm. At 6 months he was 0.8lpm. It was around this time that we were called in by Finn’s consultant to meet with him and was given the news of a diagnosis – ABCA3. We had never heard of this and we were completely stunned. Since ABCA3 is an autosomal recessive genetic condition (i.e. coming from both parents) we were shocked how it hadn’t been picked up with our previous 2 children. It had to happen on our 3rd. The world felt disjointed; nothing made sense anymore. Our feet were taken from underneath us.
As soon as we got home, we Googled ABCA3 and we did not expect to find what we did. On every page, on every journal, it was death. All reported children who had ABCA3 had died. But it didn’t make sense. Finn was still here. He was doing ‘OK’. Maybe there is hope out there? And there we found it, halfway down on the 6th Google page was a webpage of a little girl with ABCA3 who was alive and was thriving. We couldn’t believe it! There were links to a US forum and we jumped straight on there and introduced our story. We cannot tell you how much that contact with other parents gave us hope. What strength we received! And meeting two other UK Mum’s who had chILD just changed our life forever. Their children didn’t have ABCA3 but it didn’t matter; that banner of chILD was enough and we all shared similar experiences, fears and doubts. This was the start of chILD UK (but that is another story!).
Finn’s oxygen requirements were still increasing. Even though he was gaining good weight with the tube feedings (the naso gastric tube was replaced by a PEG tube – a tube that feeds directly into the stomach), his oxygen was still going up and up and up. We discussed possible medicine changes and also discussed lung transplantation as we knew that his ABCA3 disease was progressive. Again, like what we experienced when he was in ICU, we were preparing ourselves mentally for him to die. Very morbidly, we picked out his funeral songs. We found ourselves catching moments of tears and intense grief. We were bordering on depression and the only thing keeping a smile on our faces was keeping the strength together for all of our children. All of that changed when at 15 months of age, we found a lump in Finn’s abdomen. We took him to the hospital and within 3 hours after an ultrasound he was diagnosed with a Wilms tumour (kidney cancer). We were absolutely devastated.
Every credit to the oncology department, within the week he was prepped for chemotherapy treatment and booked in for surgery. Within the first two chemo sessions we noticed something miraculous occurring. Finn’s oxygen requirements were reducing. At the time of admission, he was 1.4lpm and within two weeks he went down to 0.8lpm. We were amazed by the change in his lung function and asked his consultants what was happening but they were hesitant to give too much information. After 4 rounds of chemotherapy and the removal of the tumour, we were elated to find that Finn’s Wilms was stage 1 cancer. This meant that he would only need a few more chemo sessions and then he would be placed under review in remission. Incredibly also, Finn’s personality had changed. He was no longer niggly, sad looking and tired. His energy levels increased as his oxygen levels decreased. An x-ray on his lungs showed a lot of the fibrosis was clearing. We were seeing a very different child. Even his feeding dramatically improved. Less frequent vomiting and secretions. We attempted to get him to learn to eat but again, that is another story.
The unbelievable truth is, Finn’s cancer saved his lungs. We don’t know how or why, but we are extremely grateful that it did. Over time Finn’s oxygen levels have decreased showing improvement in his lung function. From being on oxygen 24/7 to where, he now he only needs a small amount of oxygen when sleeping at night time (0.3lpm). Writing this today Finn is 8 years old and 6 years in remission of cancer. Finn is in mainstream school performing similar to his peers despite his rough start. He is an extremely gentle and fun loving boy where to look at him you would not know what he has been through. Gratefully, we don’t think he even knows what he has been through. Saying that, caring for Finn has never been easy. There has always been a battle over something. All in all however, our experiences with his health care professionals have been great. Our current and longest battle is teaching Finn how to eat since he developed psychological/phobic aversion to food but we are happy that he eats and takes his nutrition orally; it’s just 6 – 8 month pureed food. But whatever happens we are extremely grateful that Finn is with us here, today. We don’t want to live our lives in the “what if’s” and the “why’s”. All we have is the “now” and are enjoying it whole heartedly.
Thank you for taking the time to read Finn’s story. : )