Hollie Perry - My Story
Our tiny, gorgeous daughter Hope was born on Saturday 6th August 2016 with blonde hair and her Daddy’s nose. She was beautiful and perfect.
I couldn’t believe Hope was finally here and in my arms. A proud Dad, my partner, cut the umbilical cord and held her whilst we dressed her. We sang to her, and read her the story “guess how much i love you” and told her about how precious she is.
But my beautiful Hope had already left this world. An overwhelming love, fear, and sadness filled me. A cold cot enabled us to have Hope stay with us continuously over night, and in this time we could tell her stories, play music to her and lie with her by my side.
The following morning we wrapped Hope in a hand-knitted blanket, surrounded her with teddies, cards, pictures and things we had brought from home and finally made the choice to go home. Leaving our daughter alone in the cold cot and walking past all families with their healthy new babies was heart-rending. My partner held me up as we walked through the labour ward clutching just a blanket with tears rolling down our faces trying not to make eye contact with anyone. Once we were finally home I sobbed for two days constantly, I felt so empty and lost.
Finding out I was pregnant for the first time was a mixture of absolute joy and happiness, as well as shock and disbelief! My partner and I fell pregnant in the first month of trying and couldn’t believe our luck. When we saw our baby on the screen at the first scan, we both cried with joy. The sonographer mentioned the baby was small for the gestation, and backdated our due date. We went back for a second scan two weeks later, in which our baby was bigger but not lying in the correct position!
After the third scan we had a call from the hospital asking us to come in to discuss a recent blood test. Blissfully unaware, with small doubt it could be anything major. My partner and I went to the hospital. Our consultant looked at us and said, “Your blood results have come back showing extremely low levels of protein, and we are sorry to say we think your baby has Edwards syndrome.” I cried uncontrollably; it felt like my heart had been pulled out. We left the hospital with a leaflet on Edwards Syndrome and an appointment two weeks later for an amniocentesis.
Between these appointments, I found out about a safe test. (NIPT test) I phoned my consultant at the hospital to ask if I was eligible for this test, and if we could opt for this, as it was safer. The test is a 98% accurate diagnosis, and tests for Edwards Syndrome, Down syndrome and Patau Syndrome. Our consultant told us we were eligible for this test and at 15 weeks gestation I had this done. After waiting a week for our results and trying to think positively, my consultant phone me with our results.
“Hollie I have your test results, fantastic news your results came back with 1 in a million chance for all three syndromes. You can now relax and enjoy your pregnancy”
Of course more tears of joy; absolute happiness and positivity filled me. My partner was overjoyed and sighed with relief.
But our happiness was short-lived. At the 20-week scan the consultant said the baby’s stomach was too small and he wanted us to get a second opinion at St George’s Hospital. At this scan there were three doctors in the room and although I could see our baby moving on the screen, I sensed there was something wrong.
“Hollie the scan is showing some abnormalities with your baby. We cannot see the fourth chamber of the heart. It looks like possibly spinal defects, such as spina bifida and the tummy is far too small. We think your baby has Triploidy. We can’t be sure, the only way to be certain is by having an amniocentesis, which we can do for you today if you like,” said the consultant as she held my hand. My heart sank and I blinked away tears still trying to remain positive. I couldn’t look at my partner, as I knew he was crying. My partner and I went to a private waiting room and both sobbed and held each other, not caring who heard us.
The amniocentesis later confirmed our baby had a rare chromosome defect called Triploidy and we faced the decision as to whether to continue with the pregnancy or not. But after plenty of research, questions and opinions, I didn’t want our unborn child to suffer in anyway. Knowing Hope wasn’t compatible with life outside the womb and if i carried on with pregnancy I could risk my fertility. A decision no parent ever wants to make, we decided with heavy hearts that we would end our pregnancy.
I cannot fault the wonderful care and kindness we had from the hospital and from others once we had made our terrible decision. We went into St Helier Hospital to have Hope and the staff helped us create memories by providing a box from the charity 4Louis. My nan kindly knitted a dress for Hope as we found it difficult and distressing trying to buy clothes for a baby we had no idea how big she would be.
I was given drugs to start my labour and it took four days for Hope to be born. Returning home without my baby was the hardest thing I have ever done and I decided I wanted her name to live on by creating help for mothers and families who may go through a loss of a baby.
During my time at St Helier I discussed with the bereavement midwife, that I wanted to help make positive changes to the hospital and help other families who suffer the loss of a baby. We discussed everything I thought needed to change and now I am working to make this happen. I must mention we were also very lucky to have been introduced to Matthieu Zellweger who captured our heartache in amazing photos and shared our story in the Lancet, New York Times blog and with the rest of the world.
A personal thank you to Matthieu Zellweger for capturing these precious moments, and to all the fantastic midwives who supported us through this difficult time.
Please share our story and encourage others to break the silence.