We found out we were expecting our second child in June 2012. We were thrilled. I was unsure of my dates so we booked an early scan for later that week they said I was seven weeks pregnant. We were delighted when we found out our baby was due on our anniversary, it felt that it was meant to be.
I never suffered from any sickness just some nausea and tiredness but otherwise feeling good. I had a couple of appointments and all was looking well. I wasn’t really showing at all but wasn’t concerned as I had been the same on my first pregnancy.
In October 2012, myself and my husband arrived for our anomaly scan. I was 22 weeks pregnant. We had decided to ask the sex as we had already put a deposit on a pram and I was very eager to get shopping! We were called into the scanning room and we were so excited watching our baby on screen. The sonographer was finding it hard to get a good view of the baby and then after a few moments, she went quiet. She continued scanning for a while and then eventually said she just needed to speak to a doctor. At this point, I had a feeling that all wasn’t as it should be but I certainly was not expecting what was to come. She asked us to go for a cup of tea and come back to see the doctor in half an hour. After what seemed like a lifetime the doctor called us in. She scanned me for over half an hour in silence. The first words she said were, “It’s bad news guys”. She went on to explain that firstly there was no fluid surrounding our baby so it was very hard to get a good view to see exactly what was wrong but what she could see and was sure of didn’t look good. Our baby had no kidneys so that’s why there was no fluid as babies produce their own fluid from 17 weeks. Because there was no fluid our baby’s lungs would never develop or function. They would not be able to intubate or give steroids to help her lungs as there was “no point”. Our baby also had a very severe form of spina bifida. It was so severe that even if everything else was working correctly it would still kill her. Our baby was sadly incompatible with life.
The consultant told us that we had two options, continue with the pregnancy where we would receive weekly scans to check for a heartbeat until it stopped or we could travel to England. We were told to come back the next morning for a CVS which is a procedure where they take a sample of the placenta and send it off for chromosomal testing.
We drove home that night from the hospital completely heartbroken, scared, afraid and upset. Our world as we knew it had ended and we were in complete limbo.
The following day we arrived back in with my mother with us for support. I was rescanned by the consultant and a fetal medicine midwife. Again they told us the prognosis was the same, our baby was never going to survive and her condition was 100% fatal. They performed the CVS as there was no fluid to do amniocentesis and it was sent for testing. We would get the initial results in five days. The initial results we would receive would be to tell us if our baby had trisomy 13 (Patau syndrome) trisomy 18 (Edward’s syndrome) or Downs syndrome. We knew it wasn’t Downs syndrome it was much worse. All the other chromosomal syndromes are fatal conditions.
That evening we told our other daughter aged six the bad news. It was so heartbreaking to have to tell her that her much-longed-for sibling would die. She asked a lot of questions and we answered them as honestly as possible but in a child-friendly way. We had received an information sheet on how to tell children news like this which helped us a lot in explaining to our daughter. That night we all slept in the same bed as none of us wanted to be without each other.
We decided to keep her off school the following two days as she was so upset and we rang the school and explained what was happening. We chose a name for our baby and looked into local graveyards. Not the sort of thing we were supposed to be doing we should have been looking at cots and buggies but instead, we were looking at graveyards.
Over the weekend we discussed our options. Due to the severity of our baby’s condition with having no fluid around her she was not protected in my womb and was slowly being crushed by my organs which was a very distressing thought for me and also would be very distressing for our baby. If our baby survived the remainder of the pregnancy she would either die in distress during labour or in the moments after she was born. She would never take a breath and there would be a pain specialist on standby to administer mediation as soon as she was born.
Finally, Monday came and we got the call from the consultant. We were having another little girl, the results were clear for Trisomy 13, 18 and Down’s syndrome but the full results would take three weeks. It didn’t change our daughter’s fate though her condition was still fatal.
We went in to meet the consultant that afternoon. She rescanned me to check for a heartbeat and asked had we made any decisions. We told her we had decided to travel to England. We were given the number for Liverpool’s Women hospital to ring and send over the scans, results and reports that we had been given by our hospital.
They called us back the following day with an appointment for the following Monday. I would be 24 weeks then. We spoke with the bereavement service in the hospital over there who organised a coffin and said she would arrange the forms needed for us to bring our daughter home.
We went out and bought our daughter a blanket to wrap her in. There wasn’t much that we would be able to buy her as she would be very small so that’s was all we could get. We also bought matching teddies, 12 in total, all little animals so she would have six and we would keep the other six. We thought this was the fairest way because we knew we wouldn’t be able to share just one teddy between the three of us.
That Sunday night we tried to get a couple of hours sleep before heading to get the 2.30 am ferry to Holyhead. My husband drove from Holyhead to Liverpool through the night arriving just before 9 am. We headed in for our appointment. They brought us into a private waiting area. They came in and briefly explained how the day would go and told us we would be brought in to see the consultant in a while. Around 11.30 am we went in to be seen by the consultant. She rescanned me and we asked if there was any change or improvement. We were still wishing and hoping with all our hearts that something would change but the consultant sadly said that there was no change, the condition was worse than the previous scans revealed and we were doing what was best for our daughter. They were unsure whether she would have a cleft lip or if her spine would be covered by skin due to the lack of fluid which made scanning very difficult and we spoke briefly about that and other possible abnormalities that might be present and what she may look like.
They brought us in forms to sign and tablets to soften my uterus and cervix to get it ready for induction. They asked us did we want to have a post mortem done but because we would have to leave her in Liverpool for a week we chose not to, we already knew enough about her condition to know that it wasn’t genetic and it was “just one of those things”. We felt she had been through enough already and we didn’t want to receive a list of things wrong with our daughter. They told us to go and have some lunch and come back afterwards.
Around 5 pm they brought us in for the procedure. It only took a couple of minutes and then they brought us up to the labour ward.
The midwives came into us and explained how they would start my labour and what to expect. Around midnight on Monday, my labour started. At 9.08 am on Tuesday morning my beautiful daughter was born. The room was silent. She was 28cm long and weighed 1lb 6oz. She was perfect to us. She didn’t have a cleft lip but her spine wasn’t fully covered by skin and we could see evidence of her abnormalities in her legs. We asked the nurses to dress her for us as she looked so delicate. They took her away and took hand and footprints and lovely photos for us and brought her back dressed in a beautiful hat and gown which had been donated by a charity. I was very unwell from all the medications I had taken during labour. After an hour or so the catholic priest came in for a blessing and naming ceremony. They gave us a lovely blessing cert and a cert with her name and time and date of arrival to keep. These are the only things we have our daughter’s name on.
At 7 pm that day I was discharged. We brought our daughter out in her coffin the hospital had organised for us and we headed off for the boat in Holyhead. We had contacted the ferry company before travelling and they had no problems with us bringing our daughter on board but we just couldn’t have her coffin in sight in the car. We arrived home at 2.30 am.
The following day our older daughter came home from school to meet her sister. Both sets of parents, brothers, sisters, nieces and nephews came to see her. On Thursday we had another blessing with a local priest in our home and on Friday we had her funeral and buried her in the local graveyard. The priest did an amazing job and had even gone to the trouble of printing out booklets for the blessing and funeral for us. We consider ourselves lucky that we could do this as not everyone who travels has this opportunity to do this.
On the morning of the funeral, we swapped blankets with her so we have the one she had been wrapped up in and we gave her the blanket we had been sleeping with. We placed six of the teddies with her and wrapped her in my husband’s christening cardigan. Our daughter, nieces and nephews drew her pictures and wrote letters to her which we also put in. I gave her a piece of jewellery which I had since childhood and we said our final goodbyes.
We had three days with our daughter and it was nowhere near enough but it was the best we could have had and we are so grateful that we had that time together with her. We did what we believe was right for our daughter; she didn’t suffer any pain or distress and just drifted off to sleep. We have a photo album full of photos of her with us, her blanket, matching teddies and little mementoes from the hospital. Her whole lifetime fits into a box but it is something we cherish and will forever.
We talk about her daily; she is included in everything we do. She is the missing piece in our family which will never be replaced and she is forever in our hearts.
