HEADING to her 20-week pregnancy scan, 16-year-old Brit schoolgirl Ivy Jean Moore bubbled over with excitement.
The young mum-to-be, dressed in party clothes for her post-appointment gender reveal do, couldn’t wait to find out if she was having a boy or a girl.
Ivy Jean Moore was just 16 when she found out she was pregnantCredit: Ivy Jean Moore
The mum had to have an abortion at 25 weeks after finding out her baby was terminally illCredit: Ivy Jean Moore
Instead she learnt her unborn baby, the unexpected but much-wanted result of a contraceptive accident with a teenage boyfriend, was terminally ill.
If he survived birth it would be for just minutes.
“Over the next few weeks I went into total denial,” said Ivy Jean, now 17, speaking with her mum Kelly’s permission. “I researched frantically for advice on how he could survive, looking desperately for treatment options online. But there was no way he could.”
Sadly Ivy Jean’s baby had the same condition she had been born with, branchiootorenal (BOR) syndrome, a condition that disrupts the development of tissues in the neck and causes malformations of the ears and kidneys.
But whereas she had it to a lesser degree his kidneys hadn’t developed at all.
“Doctors at University Hospital Coventry and Warwickshire were kind but said there was no way he would live for any time past birth and he would likely be stillborn,” she continued.
“I was offered the option of a medical abortion or to deliver him fullterm, although they reccomended the termination.”
In a quandary Ivy Jean initially vowed to keep her much-wanted baby. But, at 25 weeks, she made the heartbreaking decision to follow medics advice and undergo a medical abortion.
At the same hospital where she had her scans in January 2021 she was given a pessary to induce delivery. After around three hours of active labour, with her mum by her side, her son arrived.
“He was perfect but small,” she said. “He had a tiny tuft of gingery hair, weighed 1lb 11oz and after he was born the staff cleaned him up and wrapped him in my arms. I loved him instantly.”
Ivy Jean had intended to call him Phoenix but on seeing him decided he was to be called Milo-Paul – which means little soldier. “It just suited him,” she said.
He was perfect but small. He had a tiny tuft of gingery hair, weighed 1lb 11oz and after he was born the staff cleaned him up and wrapped him in my arms.
Initially falling pregnant not long after turning 16 and while sitting her GCSEs Ivy Jean, currently studying for an access course at college, was “incredibly nervous”.
“Contraception had failed and I’d missed my period,” she said. “I took a pregnancy test and it was positive.
“But there were no doubts in my mind – I knew I was going to have my baby.”
Her mum supported her and she carried on going to school while battling morning sickness which was “pretty bad”.
At 10 weeks she saw her baby for the first time at a routine checkup on her kidneys.
“I was having an ultrasound to see if they were okay and the sonographer asked if I wanted to see my baby,” she said. “I said yes, of course, and it was amazing. He looked like a little jelly bean.”
Her pregnancy was high-risk because of her illness but she hoped things would be okay.
“So I was so sad they weren’t,” she said. “But after Milo arrived I was given a CuddleCot – a cooling cot – where he could lie next to me.
What is branchiootorenal syndrome?
Branchiootorenal spectrum disorders are hereditary – but the symptoms can vary greatly from person-to-person.
Branchiootorenal syndrome is characterised by pits or ear tags in front of the outer ear and abnormal passages from the throat to the outside surface of the neck.
It can also cause malformations of the outer, middle and inner ear which can cause hearing loss.
The kidney abnormalities associated with BOR syndrome range from mild to very severe. In milder cases, the kidney may be unusually shaped. In more severe cases, there may be duplication of the collecting system of the kidneys and/or absence or failure of one or both of the kidneys to form.
“For three days he lay there and I spent time with him.
“I was able to chat to him, cuddle him and just be his mum.”
A month after he arrived he was laid to rest and Ivy Jean, still grieving, decided to share her heartbreaking story on social media.
She wanted people to know what she had been through – and how hard the decision to abort her baby had been.
And sadly since then she’s had a second lost pregnancy, a miscarriage at six weeks.
For three days he lay there and I spent time with him. I was able to chat to him, cuddle him and just be his mum.
Doctors now believe she can have a viable pregnancy in the future but IVF intervention to avoid a child having the same condition as her might be the most prudent way forward.
And she’s shared her story on social media.
She wrote on Instagram: “I gave birth to him, and held him, clothed him, and gave him a name and had a funeral for him, he was even registered legally by law with a stillbirth certificate.
“My decision to save my son a painful few minutes of life, was the same decision that caused his death.
“Do you know how hard it is to live with that? To know you chose to abort the child you so desperately wanted and loved?”
Unfortunately she’s been trolled for it.
“I’m called immature, a murderer, vile, selfish, shameful, disgraceful and disgusting” she said. “I get these every single day in my TikTok comments from middleaged men and women who invalidate my loss because I chose to have an abortion, an abortion that I chose, to be selfless, not selfish.
“How does that make me a murderer? Women like me who have had to have an abortion because their life depended on it? Women who chose abortion because their baby had deformities/abnormalities? We are being called murderers.
“I loved my boy so much – this isn’t something I’d have chosen… especially not at 16.”
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