I’m having my baby next week ...but we have already had to plan his funeral
Tragic couple told a birth defect means child will not live more than a few days
FOR most expectant parents the last few weeks before their baby’s birth are spent excitedly discussing names and decorating the nursery.
But one young mother has had to face the agonising ordeal of planning her son’s funeral before he has even been born.
Nicole Gaunt’s baby has a rare birth defect which means that he will survive for no more than a few days.
The 19-year-old was told during a 12-week scan that her son had a disorder called anencephaly, which means a major portion of the brain and skull is missing.
Miss Gaunt and her partner Jordan Garvie, from Cambuslang, Lanarkshire, were given the option of terminating the pregnancy but decided against doing so in order to ‘cherish every moment we have with him’.
Now, a week before she is due to give birth, Miss Gaunt and 22-year-old Mr Garvie face the heartbreaking task of planning a funeral for their unborn son, who they have named JJ.
Miss Gaunt said: ‘We had an early scan at eight weeks but everything seemed fine. I had no idea anything was wrong.
‘During our 12-week scan the doctor left the room and we didn’t know what was happening.
‘Then another doctor came in and scanned me in silence. We were so scared After a while he told me that my baby’s head wasn’t forming properly.
‘He explained what anencephaly was and told us there was no cure or treatment. Our hearts sank. I just burst into tears.’
The condition occurs during a child’s very early development in the womb, typically between the 23rd and 26th day following conception.
Babies born with anencephaly are usually blind, deaf and are unaware of their surroundings. The life expectancy of those who survive birth is only a few hours or, at most, a few days. Miss Gaunt added: ‘We were already so in love with him. He was still fighting, so we felt we had to [continue with the pregnancy].
‘We just wanted to give him a chance and cherish every moment we have with him.
‘Continuing with the pregnancy has meant that we got to find out that we are having a beautiful baby boy, got to experience feeling him kick and somersault and believe me, he makes his presence well known.
‘We just don’t have a clue what will happen. We don’t know if he will live for days, hours, or even only minutes. We will just have to see how long he fights for.’
The couple have arranged for JJ to receive end of life care at Robin House hospice in Balloch, Dunbartonshire.
They have also set up a Just Giving fundraising page appealing for donations towards the cost of their baby boy’s burial plot and headstone.
The page reads: ‘We were told the news no parent ever wants to hear – “Your baby is not compatible with life”.
‘It is breaking my heart to speak about the next step – planning JJ’s funeral.
‘We are very lucky that the Co-op is funding the funeral. As for the site we have picked for him and the headstone, they are not included.
‘If anyone could manage to make a small donation it would be much appreciated.
‘All the support has been amazing and we would just like to thank you for being part of this journey.’
Anencephaly is one of the most common neural tube defects (NTD) to affect babies in the womb, along with spina bifida.
Despite a fall in their occurrence over the last 30 years, Britain still has the highest levels of NTDs in Europe, with a prevalence rate ranging from 0.8 to 1.5 per 1,000 births.
The Scottish Government has previously suggested that birth defects such as spina bifida and
‘Our hearts sank. I burst into tears’
anencephaly could be prevented by fortifying flour with folic acid.
But last year, the head of Scotland’s food watchdog said it is unlikely the country would be able to go it alone and add folic acid to flour products such as bread.
Ross Finnie, of Food Standards Scotland, said the evidence was clear that fortification could help prevent birth defects.
However, he said that the current industry set-up meant it could only be achieved on a UKwide basis. The UK Government said it was ‘carefully considering’ the issue but no formal plans have been set out in the meantime.
It is estimated that up to 85 per cent of women do not consume enough folic acid in their diet.
NHS Scotland guidelines recommend that women who are trying to conceive a child should consume 400 micrograms of folic acid, also known as vitamin B9, every day.