I'm Abel's dad, Mark Bignell, and with my mate Matt Curtis we are losing weight to help Birmingham Children's Hospital. You can support us with a one off donation or by sponsoring one (or both!) of us.
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As a parent of three seemingly healthy and happy children you never imagine you will ever need a place like Birmingham Children's Hospital.

At just 10 weeks and 4 days old, this all changed for Abel on 26th November 2015, along with our lives. Abel's story is a long one and there will be a picture timeline uploaded to this account for the full story.

Abel had been ill for a few days, but he was hitting a bit of a high temperature and one of the other children had a chest infection so Emma (Abel's mum) took him to the doctors, just to make sure he wasn't getting an infection as well. They said they wanted him to go to Sandwell General, just to have the Paediatricians take a look at him. Emma called me at work to let me know, we weren't overly worried but I left work to go with them. Our oldest was only 4 at the time and was at school, and we left the other brother with his grandparents.

At the hospital they seemed to be getting concerned over low oxygen levels and they heard a murmer. They asked about this but nothing had been mentioned when he was born, or in his early checkups. It became clear we weren't leaving any time soon whilst they monitored him so we decided it would be best to go fetch the oldest out of school over his lunchbreak and drop him off with his brother. I was back at the hospital for just 2pm. Walking back onto the ward Abel was being rushed into a recovery room and stripped off as they tried to stabilse him. We were in a bit of daze, not believing what was happening.

The doctors made the decision he need to be transferred to the Heart Unit at Birmingham Children's Hospital and we were being prepared for the possibility of immediate surgery. By 5pm Abel was given a drug that had the potential to stop his heart beating, expected to be in intensive care, was put into an incubator and loaded into the ambulance along with Emma.

By the time I had reached the hospital through rush hour Abel was on Ward 11's High Dependancy Unit and having an echo done on his heart. He didn't suffer the side effects of the drug during transport thankfully. By 9pm we had our first sit down with Dr. Rao, who explained to us that Abel had a rare congential heart condition called Tetralogy of Fallot. They had stabilised him and he would be discussed with the surgeons the following morning. This was the first of many appointments we had with Dr. Rao, who was kind and very helpful and patient.

The surgeons were happy to allow Abel to grow more before operating, but he had developed a chest infection and couldn't hold his oxygen levels in his blood. We were moved into an isolation room and as he recovered his oxygen levels stabilised. He was discharged on the 1st December 2015, and we were told we would need to come back once a month to see Dr. Rao and to keep a close eye on him as children with this condition are prone to spells, which are like fits caused by oxygen being starved from the brain. Abel was fortunate enough to never suffer from this before his surgery.

Over the next few weeks and months we had regular visits. A genetic blood test confirmed a diagnosis of DiGeorge Syndrome, also known as 22Q11.2 deletion, during this time. This missing chromosome has a broad spectrum of issues it can cause, however early indications suggest Abel is on the low end of the spectrum...only time will tell.

On Friday 10th June we met with Mr Barron, one of the heart surgeons at Birmingham Children's Hospital. We discussed the surgery and we left expecting an appointment for the operation within 4-6 weeks. We said we would be happy to take a cancellation.

On 15th June we received a call asking if we could come in the following day with surgery taking place on 17th June.

At just 9 months old, Abel had life saving open heart surgery. Whilst the operation went well his recovery was very intense. On the first night so many doctors and nurses in PICU worked hard to keep him alive as his body shut down. Early on the Saturday morning the decision was made to re-open his chest to relieve the pressure of fluid around the heart and lungs, and he remained like this for 3 full days in an induced coma. On the 4th day in intensive care he was closed back up and it took over 16 hours for him to begin coming out of the induced coma. During this time he was on a pacemaker and a ventilator, unable to breath for himself. He also had acute kidney failure, however he avoided dialysis as he responded to dihoretic medication.

After a full week on PICU, Abel was finally transferred up to the High Dependancy Unit on Ward 12. He wasn't out the woods but it was a step in the right direction. On the Sunday of Week 2 in hospital I had left as we have 2 other children mentioned earlier, and I received a call from Emma...the fluid seemed to be building back up and they were preparing the theatre in case they had to put drains back in. I arrived whilst they were scanning him and they monitored him through the night and decided against going back into theatre. It took a further week on HDU before the doctors and nurses felt Abel was well enough to move onto the normal part of the ward.

Abels improvement was steady, but he was still on morphine and being tube fed when he moved out of HDU, as well as IV dihoretics still for his kidneys. There was also still fluid on his chest that was being monitored. After the 3rd week in hospital the nurses didn't feel Abel was ready to be discharged, however we were given home leave for the whole weekend. This was Abel's turning point, being home with his 2 brothers and his parents he was sitting up and playing. After going back in from the weekend at home, he was discharged with a follow up 4 days later.

I am pleased to say that now, after 6 weeks, all the fluid on his chest as lungs is gone, he is being weaned off the dihoretics and in himself he is back to where he was before, only now his heart it working well and pumping the oxygen around his body as it should. His oxygen levels sit between 98 and 100% like a normal, healthy baby. He will need further surgery in his teens, which was expected.

There are so many people we owe our gratitude to, family members, friends (old and new), liasons, work collegues and understanding Directors, Surgeons, Doctors, Nurses, Student Nurses and so many more.

As previously mentioned, Abel also has another rare condition called DiGeorge Syndrome. There's another very supportive organisation called Max Appeal and I know Emma has found their members very reassuring as their children have gone through similar experiences.

Thanks for reading this, I haven't gone into the finer details but feel free to ask me anything, or if you are about to go through something similar i would be happy to talk about our experiences. The Birmingham Children's Hospital have been amazing, and we count ourselves as fortunate ones to have walked away. There are some families out there you can't even imagine what they are going through, and without the Charity's support, their time would be much more difficult.

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