Testimonies from Northern Ireland: Baby Lily Rose

For the attention of the Women and Equalities Committee,

My name is Gemma Holmes. I am writing to submit evidence to the committee as an individual – my own personal testimony.  At my 24 week scan my husband, David, and I received the devastating news that our baby daughter, Lily Rose, was diagnosed with Trisomy 18 and Congenital Diaphragmatic Hernia (CDH). I was told that my baby girl was ‘incompatible with life’ because of her condition and that she would not survive the pregnancy. It was then recommended that I abort my little baby.  We didn’t choose abortion, because our baby was worthy of love and a chance at life. I know that changing the law to introduce abortion to Northern Ireland wouldn’t help parents like us. Instead, perinatal hospice care is invaluable to us and should be better funded and promoted.

Executive Summary:

  • My baby daughter, Lily Rose, was diagnosed with a life-limiting condition, Trisomy 18 and Congenital Diaphragmatic Hernia (CDH), at her 24 week scan.
  • We were told Lily Rose was “incompatible with life” and were given such little support by the hospital – we were told to go home and google her condition
  • Medical staff recommended that we abort our little baby
  • Choosing to give Lily Rose a chance, instead of opting for a late term abortion, meant that we had the honour of spending precious time with our little girl
  • Abortion, in circumstances like ours, wouldn’t have helped our situation, but would have robbed us of the precious time we needed with our baby

Testimony:

After receiving the devastating diagnosis at our 24 week scan, we were told to ‘Google’ and research the condition. There was no support and there was no counselling offered. In fact we were just dismissed and abandoned to cope with this devastating diagnosis. My husband and I felt that our precious unborn baby meant nothing to those who were supposed to care for me and my little child. At 11.52am on 11th December 2013, my baby girl, Lily Rose, who weighed 2lbs 8 ozs, was born sleeping. Sadly, she grew a set of angel wings and went straight to heaven.

I have been made aware of Westminster’s attempts to amend the law on abortion in Northern Ireland. As a staff nurse who currently works in the Altnagelvin Hospital, I urgently request that the Westminster Women and Equalities committee seriously consider my experience and the way my baby and I were treated. Through my testimony, I also want to highlight the pressing need to establish better provision of Perinatal Hospice Care in Northern Ireland. Realistically the solution here is not to legalise abortion in cases of foetal abnormality, because mothers like me need real care and support.

After the tragic death of my precious baby girl, Lily Rose, I set up a Facebook page in her honour, in the hope that other mothers in similar circumstances could help each other. Since then I have been contacted by numerous parents throughout Northern Ireland who have faced similar circumstances and there is a mutual agreement that we have not received the care that should have been there for us after receiving such devastating news.

Recommendations for the government:

I have since read and researched the benefits of perinatal hospice care. Perinatal hospice care is invaluable in that it provides supportive care from the time of diagnosis. Parents and families are able to spend precious time with their babies, both while the baby is in the womb, and then for hours, days and sometimes weeks, months and even years after birth. I believe changing the law in Northern Ireland will not help us parents. Sadly, we will still have to face the reality that our child may not make it, but the way forward would be to introduce better perinatal hospice care.

Yours sincerely,

Gemma Holmes

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