Keith and I decided that we would love to make an addition to our family of two boys, so we decided to try and get pregnant. I got pregnant in October 2010 but sadly we lost this baby in January 2011 as baby’s heart was not beating.
I had a D + C in a maternity hospital in Dublin, they were very good to me at the time. I felt I wasn’t ready to give up just yet and tried again. I got pregnant again in April 2011, and we were full of hope, joy, excitement and we just couldn’t be happier. I was seen in the hospital for an early ultrasound because of my past miscarriage and to be honest, I was delighted and eager to make sure that there was a little heartbeat for us to see.
Everything was good and normal and the sonographer decided to bring me back at 10 weeks or thereabouts to do a Nuchal Scan. This is where, they take my age, measure the back of the baby’s neck and the information is put into a computer where it gives its determination on whether our baby will be born with one of the trisomy’s 13, 18 or 21. The results were not great, we were given a 1 in 2 chance that our baby would have Down’s Syndrome. We were sad, I will not lie, but we lived in hope as it was only a computer diagnosis. We were told that they would bring us back at 15 weeks to do an Amniocentesis, where a fine needle is put into my stomach and collects some of the fluid that surrounds the baby. My consultant told us that he would send it off to Scotland and the results would be back in three days. He arranged for us to come back the week later.
When he carried out the procedure, there was a lot of fluid around the baby and he just said that we would just have to wait and see. I prayed that all would be ok, but that was never going to happen. We went back the week later and we were appointed to another doctor on the same team, we were brought into what I refer to as “The BAD NEWS ROOM”. She read out the results from Scotland which revealed that our baby was a female with Trisomy 21- Down’s Syndrome with Hydrops. She had congenital heart failure and her kidneys were not doing what they should and were building up in other parts of her body. She had growths at the back of her head, Hygromas, and there was a possibility that they may decrease.
I was in total shock, I was numb. My response to the doctor was ‘It’s only Downs’, but she was quick to say that her heart was under immense pressure to try and keep the kidneys going but that she was extremely sick. My husband asked her what do we do? Every day that she grows more, her kidneys will drown her other organs, this was our worst nightmare. I refused to cry and left the hospital and rang my GP who was kind enough to see us straight away. My husband had the name of the hospital that we were told about from the doctor, Keith googled it when we got home. I sat in my house and couldn’t even speak.
The pain of knowing that my child would die and that I would be faced with the choice of letting her die inside me and then waiting to see if I go full term; this would not be an option for me. The heartache of knowing that my daughter, who we decided to name Lorianne, was moving inside of me and I would be losing her and never taking her home was so painful but I knew that I wouldn’t even think of letting her suffer. Keith rang The Liverpool’s Women’s Hospital and was speaking to a midwife who asked that we fax over all the hospital files so the consultant over in Liverpool could review them before seeing us.
My GP had his secretary fax over all the information and later that evening we got a call back from the midwife to say that we would be booked in the following Tuesday morning at 9.30 am. As parents faced with this and trying to stay as normal as we could for our youngest boy was very hard. We flew over to the Hospital in Liverpool and our midwife, was waiting to meet us. She was so good and warm to us and tried to make us feel at ease. I found myself saying that I wasn’t here by choice and that we loved our baby girl and that she was planned and very much wanted. It was like I almost felt the need to justify myself to her.
She assured me that it was not the case and that it was barbaric the way couples with sick babies cannot be facilitated back at home. She explained what would happen and told us that the Consultant would be with us shortly. At one stage I thought of just running out, but deep inside I knew as we had been told she would never comply with life! in other words, she would never live to take her first breath.
I had my blood pressure taken and bloods given, and then we met the Consultant. She was very compassionate towards us and told us she had looked over our files. She brought me into the ultrasound room and asked me if we would like to see Lorianne on screen as she was going to do an ultrasound and see for herself. I was over the moon at the thought of seeing our girl as by this stage 12 days had passed since the Amnio procedure. I asked the doctor if she would do just one thing for us, that was to be brutally honest with us and not to hold anything back and she did. She told us that Lorianne was one of the sickest babies with Downs that she had come across. The Hygromas at the back of her head were bigger, she was filled up with more fluid and her heart was under tremendous pressure. She told us she would be dead within two to four weeks. By that time, she would suffer like a normal person as her brain would be fully formed and she would feel her organs drowning and suffer heart failure.
This was enough to make me realise that there was no way on this Earth that I would let this happen. I remember looking at the screen and saw for ourselves that she had gotten worse in the 12 days. Keith and I held each other and were totally together on our decision; realistically there was no choice. The Consultant told us that the choice to travel over was the right one and that any choice regarding Lorianne was out of our hands. She was not compliant with life. Never heard those words before but they were words that we will never forget. That was Tuesday, 30th August 2011 and in two days on September 1st, I would be giving birth to our darling daughter Lorianne.
Thursday morning at 8.30 am, we arrived back at the hospital, where I was brought up to the ward. Our nurse showed me to my room where I would give birth. I was induced at 9.30 am and labour started pretty quickly after. I remember watching the clock and told my husband, Keith, that we would turn this into her birthday and celebrate whatever time we had left with her. Soon the most horrific labour was upon me. I was on gas and air only and Lorianne was born at 1.20 pm Thursday the 1st September 2011. A nurse took her away to clean her up and then the worst happened, I started haemorrhaging.
They tried frantically to stop the bleeding while I was awake on gas and air. Keith was asked to leave the room so they could work on me. He could hear the screams of pain outside the ward and he told me afterwards that it was unbearable. They asked me to keep breathing the gas and air but by this time I was so weak and just wanted to see Lorianne.
They couldn’t stop the bleeding and decided I had to go to theatre. Keith was asked to go back into the room so we could have a few moments with Lorianne. We had asked for a priest to be there to baptise her and they brought Lorianne back into us. She was in a beautiful pink and white mini Moses basket with a little white hat on her head and wrapped in a hand-knit blanket. I held her and knew that my heart would never heal; I would always long for her and love her till the day I die. They took pictures and gave us her hand and foot prints. I opened the blanket because I needed to see for myself how she was. The hygromas at the back of her head were so big that there was no gap between her head and shoulders. Her stomach was so bloated from the fluid. Keith also took pictures and the priest baptised her. This was the last time we saw Lorianne. I was then rushed down to theatre where they carried out the procedure.
The following day, I was transferred to another hospital, The Royal, where they carried out a scan to check my lungs as they suspected I had a clot on my lung. They informed me that I was very lucky to be alive as I lost a lot of blood. I was kept an extra day in the hospital and we missed our booked flights home. We were longing to get home to our boys, as the youngest, Kyle, was starting school which he had to miss out on. I begged the consultant to let me home as it was only a 35-minute flight and I would go to the hospital in Dublin if need be. I was discharged at 5 am the following morning and Keith booked the next available flight home at 7.30 am.
The hardest part for me was trying to walk out of the hospital pretending I was feeling ok; I was determined to get home to my family. Leaving the hospital and boarding the plane knowing that Lorianne was now in the morgue was devastating. I cried the whole way home on the plane. A couple of weeks later I met with my consultant. We felt that he was more interested in how we were treated in Liverpool Women’s hospital and what the hospital cost rather than my physical and emotional wellbeing. He offered us genetic testing which we took. We left the hospital very disappointed and let down by our country’s medical system as I was not even checked out.
The results of the testing came back a month later and we were both perfect and that Lorianne was an accident at conception. This news did not make any difference to me. I found myself grieving and sought private counselling. This helped me deal with everything. Lorianne was cremated two weeks after her birth and was flown home to us the following week where she is now with her family.
I hope my story helps to stop women in my situation being shipped abroad like animals when they should be allowed to have the best possible care in their own country, surrounded by the support of their family and friends during their horrific ordeal. The care given and love and support I was shown in Liverpool was second to none and I will be eternally grateful to the staff of the Liverpool Women’s hospital.