A woman had to travel to England for a termination for medical reasons after her baby was diagnosed with a significant chromosome disorder.
‘Anne’, not her real name, said she had to travel as her maternity hospital in Ireland wasn’t able to guarantee that her unborn son would pass away within the legal limit of 28 days after birth despite a consultant advising the pregnancy should be interrupted.
Under Irish law, a woman cannot access a termination for medical reasons if doctors are not certain that the baby would die within a month of being born.
Anne was 21 weeks into her third pregnancy when she went for an anomaly scan and her sonographer midwife discovered a rare but manageable fetal abnormality. But a second diagnosis, delivered over the phone the next day, told Anne that her baby also had a rare chromosome abnormality.
“I was told not to Google it and come to the hospital,” Anne said.
“I was shaking and my mind was racing. I called my husband but couldn’t even explain, as I was in shock and had just been told a couple of words: ‘mutation and deletion of this chromosome 9’, which meant nothing to me.”
At the hospital, she was told her fetal specialist was away and was given a four-page report with “an algebra-like code” of the baby’s chromosome issue. Anne said doctors told her she would have to wait two weeks before anyone would discuss the condition with her.
“We had no idea what this chromosome defect meant for our baby. What impact would it have for our child, would he survive and have any quality of life?” she said.
Anne started to spend all of her time researching her baby’s condition online.
“I was on my phone 24/7… Non-stop, stressed, not sleeping,” Anne said.
“I was going onto Facebook support groups of Chromosome 9 disorders. I spoke to mothers from all around the world, I got the worst fears of my life after reading stories and speaking with people.”
She tried to track down a geneticist who could look at her baby’s diagnosis. She found a consultant at a local children’s hospital and contacted him asking for help.
“I think I left two emails and a crying voicemails to his secretary on a bank holiday weekend. I was just saying ‘please help me’,” Anne said.
On the Tuesday after the bank holiday, the geneticist called her back. He told her that the diagnosis was poor, the chromosome imbalance was very significant and the baby would have less than 1pc chance of a remotely normal life. He explained to Anne that the chromosome issue would “certainly qualify” for interruption of pregnancy.
“A weight lifted off my shoulder. He couldn’t understand why I was so grateful, but all I wanted was someone to tell me the truth,” Anne said.
Anne took a report from the geneticist directly to her maternity hospital but said she had a “cold reception”. She said the hospital could not guarantee that her baby would pass away within 28 days of being born, so she could not have a termination for medical reasons in Ireland.
“They said ‘you need to go abroad’, they said they couldn’t look after me,” she said.
“I was left wishing that we’d had a worse-off diagnosis, so that we could be looked after at home. Is that not just so wrong?”
Without a referral they had to find a hospital in England themselves. They travelled to terminate the pregnancy at just under 28 weeks.
“We were so looked after over there, it was so nice. There was dignity there. Some of them were saying ‘but we thought Ireland changed?’” Anne said.
“We were made feel proud that we cared for our son in the best way, preventing him from harm or struggle. We felt proud to have the strength, we felt happiness to hold and cuddle him. We felt peace.”
Anne spent the hours after the termination in the bed trying to make arrangements to bring her baby home.
“I phoned the fetal medicine unit in Ireland for advice on how we could bring him home safely and the response was ‘I never thought about that,’ and ‘let us know how you get on for future information’,” she said.
Anne and her partner had to buy a freezer box in Argos prior to leaving England.
“I felt dirty, as if we did something wrong and hid him in the box on the ferry,” she said.
“And still to this day, my own private consultant here hasn’t acknowledged me.”
The consultant who Anne had for her first two pregnancies was not available for her third. She had known at the start of the pregnancy that her new consultant was anti-abortion.
Six weeks after coming back from England, she wrote a letter to a consultant explaining what had happened to her. A month later, he has not replied.
“Nobody was going to own this, nobody was going to mind us. I don’t want this to happen to anybody else.
“As much as we like to think we would be safe and looked after in Ireland, we were not,” she said.
Source: Irish News