Amelia’s Story
Worthing Hospital
Amelia was born in 2023. She is now 10 months old and we did not think she would be here today.
In my 20-week scan, there were some anomalies with her umbilical cord discovered.
When I was born, I had a twin brother, but he was not viable because he had a condition called anencephaly which is a neural tube defect which means that part of the skull did not form properly. The reason why I mention this is because I remember at my 12-week scan the first thing I asked was “Please tell me if he or she has a skull?”.
They said yes. However, I knew that she would have a skull I still had to ask. We were with the sonographer and she was using the wand on my belly and her response was yes, she does have a head but there’s a growth on it. It actually was not correct.
It was a cyst on her umbilical cord that was extremely rare. So rare that they had never seen it at Worthing Hospital so they referred us to the Princess Anne Hospital in Southampton the next day. They also had never seen something like this. So the Princess Anne Hospital referred us to St George’s Hospital in Tooting. They also had never seen anything like it.
We had some of the best neonatal doctors in the country looking after us and they were going by a case study from 2005.
She had a 23 percent chance of survival at 23 weeks and needed to have an in-vitro blood transfusion, which was horrific!
In the 12 weeks that followed, we were in Tooting 19 times and each visit was at least eight hours because we had to factor in travel time.
The first six weeks - up until the 26-week mark - were extremely touch and go.
Both my and my partner Ryan‘s mental health was not good. He was looking after me so I don’t think he processed anything.
By the time our daughter was born, one cyst had grown into two cysts. One of them had been bleeding hence she needed a transfusion. One was the size of an adult kidney and the other was the size of a grapefruit. Her umbilical cord was twisted around itself, and she had a halo around the placenta, which signifies placenta abnormality.
She was born at 32 and six days gestation and was 3lb at birth.
We have two photos at home which are very dear to us. They are the Lion King moments and for me, my eyes did not go to Amelia. They went to the neonatal doctors at the back because in the first picture, they look petrified and they look like they think that everything is going to hit the fan. I think that they were very prepared for it to be an extremely tough moment and they did not know how she would do.
The incredible thing is in the second photo Amelia started crying which was 30 seconds in. The relief visible on the neonatal doctors’ faces says it all.
Amelia was then put on me about 10 minutes later after they had done their work and she had a CPAP machine on. After about 30 seconds of her being on me, she was whisked away to the neonatal intensive care unit next door. After three hours Ryan was able to go and see her but he was not allowed to touch her because it had to be me first. They wanted to ensure that she had a bond with me. I found it very difficult to pick her up for the first week - I couldn’t. People had to give her to me.
The fear and anxiety that I felt when we were unsure if our baby was going to make it was hideous. I didn’t call her by her name for three weeks. It was either baba or baby girl. I could not say her name because if I did, I was scared that I was going to lose her and I would have made a connection. I couldn’t do that.
Amelia spent five days in Southampton Hospital and then was moved to Worthing Hospital’s Special Care Baby Unit. After five weeks, she came home.
I found this was when things started to be processed. It was at this point that I realised that I needed to give back and became a supporter of the Ickle Pickles. I started my podcast “The Good, the Bad and Your Parenting Journey” to help promote community in parenting.
Please support Worthing Hospital’s current appeal to give other babies like Amelia a chance.
