Many people may ask why I want to write this on such a public space, but to me my blog and it's readers are my best friends. This is the only hobby I have ever stuck at, and it's the one thing that cheers me up and makes me feel better about myself and my life.
If you've been following me for a while you may have noticed that in July/August last year I announced I was pregnant. Although a big shock to me and my partner, we couldn't wait to have two little boys a year apart who could grow up together.
At my 20 week scan the sonographer noticed a problem, our baby's stomach was in the top half of his body next to his lungs and heart. After inviting several experts into the room including the head midwife and a doctor we were told our son had CDH, which is a congenital diaphragmatic hernia. In simple terms this meant that out sons diaphragm had not fully developed/developed a hole whilst he was growing. This meant that his stomach and bowel came through the hole and into the place where his heart and lungs were growing. We were initially told from that point that his lungs would not develop to the full size and he would instantly be put onto a ventilator at birth. We were also informed that the heart would now not grow in the right place, as it was being pushed to one side and therefore would find it harder to beat.
We were sent to Manchester's specialist unit for another scan, as that is the place where they have doctors specially trained in foetal abnormalities, therefore giving us a better diagnosis. Once the scan had finished, we were taken into a counselling room and told our baby's hands were clenched together. This is one of the common signs of Edwards syndrome. With both his hands being clenched, and CDH, they were almost certain our child would also be born with Edwards syndrome. Edwards syndrome is a chromosomal abnormality, which is the second most common after down syndrome, meaning that our son would have heart and kidney problems, difficulty breathing etc. We were basically told he had no chance of surviving.
On the 17th November, at 22 weeks pregnant, we lost our son. The hospital had a mini apartment that was separate from the labour ward where we could spend some time with him and take some photos. We decided to have his hand and footprints done and have a few pictures of him wrapped in a blanket. We were supplied with a neonatal box which contained two teddies, a blanket and hat, a card for hand and footprints as well as other bits and pieces. We decided to keep one of the teddies and have the other buried with him. After they took our son we stayed the night and left the next afternoon.
The funeral took place two weeks later. We had a burial with a graveside service. Close family came along to the service and placed flowers on his grave.
Whilst at the hospital, we both had blood samples taken, which we should receive the results from within January, to check if we are carrying anything that could have caused this, or whether it was a completely random occurrence.
There is nothing like losing a child. I cried so much when I found out he was ill, and when we lost him, that eventually no tears would come. I didn't cry at the funeral, I just felt completely numb, and afterwards felt guilty for not crying. Ever since that day I have had a cloud over my head. I have been carrying on life as normal for the sake of Alexander, but there will always be something missing and always be a reason I can't be fully happy.
I'd love if this post could raise aware of these two illnesses, especially CDH, as I think it's not well known of or spoken of. I can't believe that something so awful has happened to us, and I can only hope that in years to come, they will find treatments to save a child life.