Hello and thank you for taking a look at our JustGiving page. To raise money as well as general awareness for babies with severe heart conditions, I intend to cycle the North Coast 500 route in March 2021. I'll be unsupported, riding solo as well as wild camping each night. I'll be trying to complete the route in as close to 5 days as possible.
2020 has been very hard for everyone with Coronavirus but for the us, it has been especially difficult. We have decided to write a little bit about our experience to try and raise some awareness as well as some money to donate to a couple of charities that have helped us as well as many other families in the UK.
Initially my wife and I started the year full of joy to find out that we were pregnant. A few months later we decided to tell our daughters; Sofia and Hana. Despite the UK lockdown we were always in high spirits and our news was getting us through it all.
However, at our 20-week scan, our world came crashing down when we were told that our baby boy had at least one congenital heart defect (CHD). We were then referred to the Queen Elizabeth University Hospital in Glasgow where some of the top UK children's heart specialists are based. The team there confirmed that our son had several CHDs. When I say several, there were nine:
- Right atrial isomerism
- Pulmonary veins to right sided morphological left atrium
- Atrioventricular septal defect
- Moderate AV valve regurgitation
- Single ventricle morphology
- Aorta arising anteriorly
- Pulmonary atresia
- Right aortic arch
- Bilateral superior Vena cavae
As well as these nine CHDs, his stomach was on his right side coupled with Duodenal atresia. We then continued to have check-up scans at the Queen Elizabeth to see if there were any developments in our son's heart. Fortunately, at each scan we could see he was getting bigger and his issues were not worsening. Throughtout these appointments we were informed of how serious his conditions were separately but to have them all in one child was very rare.
A week short of his due date, my amazing and strong wife Ashley gave birth to our little boy Zakariya; Zaki for short. After a quick cuddle he was taken away to the neonatal intensive care unit (NICU) to have his drip of Prostaglandin started. This is a drug that is used to keep a duct in the heart open. It naturally closes soon after birth - which would be fine for a regular heart - however if Zaki's closed, his heart would not be able to function. NICU then became our home for the next seven long days. There were x-rays, heart scans, blood tests, as well as the task of changing his nappy through the hand holes of an incubator! Zaki was doing well and deceivingly looked like an ordinary baby laying there for that week - albeit for around 10 million cables and sensors attached to him. After all the scan data had been analysed the cardiac team got together to discuss Zaki's options for surgery but due to the complexity and sheer number of CHDs they felt that there was nothing that could be done to help him. We brokedown. The team took us through their reasoning and explained their decision. Even though we knew that this was a likely outcome way back at the 20-week scan, it was painful to hear. We were guided through our palliative care options and we decided to take our son to a children's hospice where we could be together as comfortable as possible.
The next morning, we arrived at Robin House; part of Children's Hospices Across Scotland (CHAS). Where we stayed for the next three days with our son until he passed away in his sleep at ten days old. Our ten month journey came to an end, well to some degree it has but we will forever remember him and are thankful for the time we had with him.
We will never forget the day we were given that devastating news but we will also never forget the people who educated, comforted and looked out for us during that time. The two charities we have chosen were there for us at the start and the end of our journey, that is why we want to give back to these people, these charities so that they can continue to help the next family that go through a similar journey.
The first of the two charities is Tiny Tickers, their aim is to improve the early detection and care of babies with serious heart conditions. The fact that Zaki's conditions were detected as early as they were, gave us time to understand and accept; this is something that we will be forever thankful for. Some statistics such as "1,000 babies leave UK hospitals every year with an undiagnosed heart defect" and "only around half of congenital heart defects are picked up during routine prenatal scanning" show just how important it is to help improve early detection and give families this time to process and prepare for what may or may not happen.
The second charity is CHAS, they have been offering full family support for babies, children and young people for over twenty years. Zaki's last few days were spent at Robin House, it was a home away from home. Before we knew that a hospice was an option for us, we were worried that Zaki would never have been able to just be a baby. Robin House took that worry away and we played, read stories and even went for a walk in the garden with our son before he passed away.
So we ask you to donate only what you comfortably can (especially during these times) for either or both of these great charities. I've chosen to cycle the NC500 as cycling is a love of mine and with my daughters being keen cyclists already I would like to think that Zaki would have joined our little Pelaton.
Thanks for reading and donating.