By Rebecca Cheetham
I had a great pregnancy other than a couple of issues to do with me; gestational diabetes and obstetric cholestasis. Pregnancy was zooming by fast and I couldn't wait to have my little girl here.
All of my scans were always perfect apart from Alice never being the most cooperative! I was scanned quite regularly due to my health complications, mostly every 3 weeks from 28 weeks and things seemed to be going very well.
It was the morning of my 36 week scan and we were so excited because this was the day we were going to find out the induction date. I would know when I would finally get to meet my little girl!
Everything seemed to be going okay during the scan and as normal until the sonographer said she needed another measurement and needed another member of staff to help. She went and found someone else to come into the scan. At this point I knew that something wasn't right; I asked if everything was okay and she said 'Would you like me to get your husband?'
My husband was sat outside in the waiting room with our son; he entered the room instantly worried as he saw all the different people come in to the scan room. I began to cry when I saw his face as I knew something was very wrong.
They took us into a private room, this was when they told us that our daughter’s heart had been pushed to the left hand ribcage and that they expect this is because she had a Congenital Diaphragmatic Hernia (CDH).
They let us have some time to process this devastating news and went off to book an appointment with a specialist hospital.
That appointment came and they confirmed that it was CDH and the hernia was on the right side which was rarer. We went on to meet the doctors and the NICU staff. One of the doctors who spoke to us gave us some more information; they said CDH had a 50% chance of survival usually but that this was reduced to 30% in babies with a right sided hernia but because it was found late our daughter had a good chance of having fully developed lungs. They booked me in for an induction a week later.
I remember the doctors talking to us but zoning out until I heard the words ‘if she survives the first 48 hours’.... If... How had I gone from decorating my daughter’s room and packing her bag to worrying if she will survive? It was like a horrible nightmare. I remember coming home and seeing her bed next to ours and breaking down why us, how is this happening I just wanted to wake up.
The following week came, we gathered as much hope as we could knowing that it was found late so she will be okay, we pushed any doubt out of our mind at that time and just focused on delivery.
The induction happened quickly; at 2.42am on 28th September 2018 Alice was born. The room was silent for a second, and then I saw all of the NICU staff gather to take her and sedate and incubate her. I expected her to cry… Why didn't she cry? I begged and screamed asking what was going on in the corner of the room, why was no one telling me anything?
What felt like a life time later they pushed her incubator up to me, so I could see her. She was so beautiful and had the cutest dimple, she was full of wires but she still looked perfect, they let us take her picture and then quickly took her away.
In that time while we waited on news I got up and showered and tried to get some sleep, we honestly thought she would be okay at this point. We hadn't rung our families yet due to not knowing anything other than she was here. We got to see her a few times in the NICU, they told us that it was a lot worse than they expected and they were struggling to keep her stable. They explained the machines and told us they had requested the ECMO machine (Extracorporeal Membrane Oxygenation), also known as extracorporeal life support, it is an extracorporeal technique of providing prolonged cardiac and respiratory support to someone whose heart and lungs are unable to provide an adequate amount of gas exchange or perfusion to sustain life.
The last time we saw Alice we walked into the room to see her skin had gone a strange colour and she didn't look like she did an hour before. We waited for the doctor to come to speak to us but we knew looking at Alice that the news wouldn't be good, but nothing prepared us for what he was going to say.
'I'm sorry but there is nothing more we can do'; how could this be I begged! He then said no matter what they were doing she was losing her fight and her body just couldn’t take anymore, she was quickly declining and would pass away shortly, they offered to take out all of her tubes so we could hold her while she passed.
At 8.55am our daughter passed away in Mummy’s arms with Daddy holding her hand. I pleaded so hard that this couldn't be happening, how was she gone? I have a lot of regrets when it came to losing her. I wish I’d taken the offer to bathe and dress her but I was so scared and upset I just couldn't, I wish I could have spent more time with her in the hours she was alive and took a million pictures. I wish I'd let all of the family meet her, with loss comes regrets but without being able to change anything about it.
If we were told at the 20 anomaly scan about her condition we would have still carried on, she was definitely worth the wait.
I miss her so much every day we hope to make her proud by raising money and spreading awareness. Baby loss is a group I never wanted to join but I have met some very inspiring people all keeping their baby's memory alive.