Rainbow Trust is a charity that supports children with life threatening conditions. When families face these situations, support is very often focused on the mum who is, more often than not, the main childcare provider. Rainbow Trust recognises this can be an issue and wants to make clear that dads are not invisible and also need support. The guest post below was written by Craig Snow whose daughter, Alisia, has battled against the odds and survived despite having very serious medical issues that came to light at the 20 week scan.
When we found out we were pregnant, Michelle, my partner and I were over the moon. We went out straight away to buy all the equipment we’d need for our new baby. Unfortunately, Michelle didn’t have a great pregnancy but nothing prepared us for what we were told at our 20 week scan – our baby girl’s organs were in the wrong place. We were devastated.
We were told we could abort or let her go to full term with only a 10% chance of survival. We were in shock, we didn’t know what to do. I didn’t want a child that wouldn’t have a life or be able to enjoy it. We didn’t know if we could put ourselves through giving birth to a child who might die within days or take that chance – that 10% chance that she may survive.
That’s what we clung to, that one in ten chance. We chose to have the baby and as soon as Alisia was born, she was whipped away from Michelle and wired up to a ventilator, a tube was put down her throat and she was attached to every machine possible to keep her alive. I stayed with Michelle in recovery and half expected Alisia to be dead by the time I saw her. I didn’t think she’d survive the day and I had prepared myself for that.
When I did see her, she was in an incubator and heavily sedated to stop her moving. I remember speaking to the doctors as if she was dead already. We couldn’t touch her, we couldn’t do anything. We just had to wait and see how she managed. She survived for three weeks and just when doctors told us to think about switching off the machines, she began to improve each day. We couldn’t believe it, she was that ‘one in ten’ chance baby!
But she would be in hospital for a long time so Michelle and I decided that I should be the one to stay with her as I don’t drive. Our two other children still needed looking after. They needed to get to school and carry on with their lives so Michelle stayed home with them.
I stayed in a house for parents whose children were expected to be in the hospital for a long time. I was with other families going through similar experiences. It was hard seeing other people suffering, it was hard coming ‘home’ to that each night after spending the day in the hospital with Alisia, watching her fight for each breath she took.
I spent as much time as I could with her even when she was sedated. I tried to keep busy by speaking to nurses and other families on the ward. It felt like I was at the hospital for a job, like I was a doctor, not a father. I blocked the dad side of me out just so I could cope watching my baby girl going through her traumatic daily routines.
After a few months I moved into Ronald McDonald House which housed 36 families whose children were on the ward. I watched children pass away and I saw couples fall apart under the strain. All I wanted was to be with Alisia, to care for her and to be strong for her. Being surrounded by all these families and their emotions made it so much harder.
The nurses showed me how to clean/suction Alisia’s tracheostomy and change her nasogastric tube. It’s one thing to change your baby’s nappy but to have to clean/suction her tracheostomy and nasogastric tubes was awful. I felt like I was strangling her, my precious, fragile little baby – she’d choke and cough as it was so traumatic and stressful for her.
On one occasion, I remember the nurse tried to take blood so was rooting around in Alisia’s small arm trying to find a suitable vein. I could feel her tiny, little hand gripping mine in panic while I watched helplessly as she squirmed in pain. That was hard.
I spent my days doing whatever I could do lift Alisia’s spirits, I wanted her out of the hospital sooner rather than later. I cared for her each day and when I could leave her alone on the ward, I made sure I had a break just to stay sane. I took breaks from the hospital and visited friends. I had to stay strong for my baby girl. I watched families spend every waking moment on the ward and I watched them get more and more depressed without a break or change of scenery.
Being in the hospital for those ten months was hard going financially. I didn’t get any benefits from anywhere but still had to eat and live. I was so lonely even though I was surrounded by people. I had no one to lean on.
When I was with Alisia, I stayed in ‘doctor mode’ and did what needed doing. I cared for her as best I could. When I wasn’t around her, I’d sit in the front room of the house for an hour to get my head around my day. I don’t think people understand what you go through in a situation like this, you hide your feelings and just do what you can to stay focused. I spoke to Michelle in the evenings and saw her some weekends but she was taking care of our two boys who also felt the pressure of the situation.
They were seven and eight at the time and had started wetting the bed again in response to the family disruption. It was tough on all of us.
I got attached to children on the ward who passed away and I watched their families grieve for their babies. It felt so unnatural seeing and experiencing it. It wasn’t supposed to be like this.
It’s changed me as a person, I used to be really closed. I didn’t think about what a disabled child went through but seeing what I’ve seen has changed the way I look at life and people. It’s made me look for the positive in any situation, no matter how bleak it seems.
When Alisia finally came out of hospital after those ten months, we settled into a difficult routine. One morning I woke up, went into her room and found her lifeless in her cot. I froze. She was gone. Michelle came in and started plugging all the machines back in as Alisia had knocked her tube out of her neck. Watching Michelle struggling brought me back into the moment and I tried what little CPR I knew on Alisia. I breathed as hard as I could into her mouth but nothing happened. I put her back on the ventilator but that didn’t seem to work either.
A few seconds later she started breathing again. I watched her chest rise and fall and the panic slowly drained out of me. That was the most frightening day of my life. After all we’d been through together, I couldn’t lose her. I’ve now installed cameras in all the rooms in our house so we can see her wherever we are.
Alisia is almost two years old and will have to be on a ventilator until she is at least three or four. The day we managed to get her off her ventilator for an hour and a half was one of my happiest. Until then she had only managed to be ventilator free for 30 minutes. I was so excited knowing we could start to give her a normal life even if only in short bursts. It was such a huge improvement and it’s one of the highlights of our journey.
We can take her out now, she is starting to stand and she is happy, my courageous little fighter.
Rainbow Trust Children’s Charity supports families like Craig’s. Help us support more dads who have a child with a life threatening or terminal illness from diagnosis through treatment and beyond and for as long as they need us. Please visit us at www.rainbowtrust.org.uk.