Some readers may find this article distressing.
Jenny Baxter and her husband Matt had been trying for a baby for nine months when she became pregnant. At their 20-week scan, they were given the devastating news that their son, Luke, had bilateral renal agenesis – a condition that prevents the kidneys from developing, leading to a severe deficiency of amniotic fluid.
The couple were given two choices: carry the pregnancy to full-term and watch Luke receive palliative care once he was born, or end the pregnancy at 21 weeks.
“We chose to terminate,” Jenny, 29, from Hertfordshire, tells HuffPost UK, just over a year on. “For us it was the right decision. I couldn’t imagine carrying on with a pregnancy knowing that my baby was going to die – by this point I was already feeling kicks.”
Every year, more than 5,000 women in the UK make the decision to end a pregnancy following a medical diagnosis. Yet despite the prevalence, termination in this circumstance is rarely spoken about. Jane Fisher, director at the charity Antenatal Results and Choices (ARC), believes it’s because this topic is a “taboo within a taboo”.
“Baby and pregnancy loss is rarely spoken about,” she says. “It is deemed to make people uncomfortable; no one wants to hear about the sad side of pregnancy. Then there is the extra layer of silence because of the stigma around termination.”
There are two types of termination available to women who decide to end their pregnancy after a foetal medical diagnosis: a surgical termination and a medical termination.
A surgical termination involves removing the pregnancy through the vagina using a suction method or other slim instruments. A medical termination requires women to take two tablets: one that stops the essential hormones so that the pregnancy cannot continue, and another to induce miscarriage or labour. After 21 weeks, some women will also be given an injection through their abdomen to stop the foetal heartbeat.
There are reasons why women might prefer either method, states the British Pregnancy Advisory Service (BPAS). “For example, some women may prefer to go through labour and delivery, and have an intact foetus that they can see and hold. Others may find a surgical procedure under general anaesthetic easier to cope with.”
Jenny had to have a medical termination, due to the fact that surgical terminations are not available in all NHS hospitals after 13 weeks. Her labour lasted six and a half hours. “I remember getting to a point where my contractions just stopped,” she says. “I cried and said, ‘I refuse to push him out’.”
The support of midwives helped her to keep going and, looking back, she’s glad the decision to have a medical termination was taken out of her hands. “I got to labour and birth him,” she says, proudly.
The couple were able to spend time with Luke overnight in the bereavement room in the labour ward, making hand and foot prints to take away in a memory box. The next day, Jenny decided it was time to go.
“I said to Matt if I don’t leave now, I don’t think I ever will,” she recalls. “The sad fact is that the bereavement room was right at the end of the hallway, so as you’re walking down you can hear babies crying and mums giving birth.
“You see all these new mums who’ve got their new babies in their carry cots and the only thing you’ve got is a box. No one knows what you’ve just gone through.”
Kim Hillier, 40, from Kent, had a medical termination in 2016 when her daughter, who she later named Beatrix, was diagnosed with major heart anomalies.
Further tests after the 20-week scan showed Beatrix’s heart was severely underdeveloped and wasn’t connected to her lungs, meaning doctors wouldn’t be able to successfully operate.
“They couldn’t tell if she would die early on or later, but there wasn’t much hope for her,” says Kim. “I would have probably carried her full-term but it would have been a case of watching her die after she was born.”
Having had two “straightforward” pregnancies with her first two children, receiving a prenatal diagnosis at 21 weeks came as a shock for Kim, who wants to raise awareness to better inform other women.
“The 20-week scan is for a reason and I was naive to it all,” she says. “I thought it was all fun, finding out if it’s a boy or a girl – all this gender reveal, blue and pink stuff is out of hand – but actually, they’re looking for problems that perhaps haven’t been detected before.”
Despite Beatrix’s diagnosis, making the decision was tough for Kim and her husband, as they’d already told their younger children they would soon have a sibling. “It was the worst – and still is – the worst time of my life,” she says. “It’s so hard, and so brave in a way, to make that decision.”
When it came to having the procedure, Kim couldn’t bring herself to walk into the waiting room. “I was crying in the corridor and my husband had to get someone to help bring me in. I had to have an injection to stop her heart. My husband and I couldn’t look while they were doing it – that was the worst bit of it.”
Kim was given the tablet to induce labour, but had an agonising wait for her contractions to begin. “It is surreal, we were there for so long,” she says.
“We were watching a film on the iPad because, well, what are you meant to do? One of the midwives did say to me, ‘you know you’re allowed to cry’, but I said, ’I have cried every day for the past week, I just want this done now’. I was exhausted from it all. I didn’t have her until 12 hours later.”
After three hours in hospital with Beatrix, Kim and her husband decided to leave.
Although Kim prefers to use the term “end of pregnancy” instead of “abortion” or “termination” when referring to her experience, she says it’s frustrating that women like her are overlooked during discussions on abortion.
“No one ever mentions us,” she says. “No one ever says: ‘Well what about women who have to end their pregnancies for medical reasons’. I feel like we’re just not spoken about.”
Jenny agrees: “Everyone has an opinion on abortion, but no one talks about the mums who really don’t have much of a choice on it.”
As well as being overlooked during discussions on abortion, Kim and Jenny both say they don’t feel included in the baby loss movement, either.
When Kim left hospital, she was given leaflets from Sands – a stillbirth and neonatal death charity. “It’s lovely and I support that charity, but it’s not for me,” she says. “I didn’t feel like I belonged with the women who’ve had miscarriages because I thought they would judge me.”
Jane Fisher, from ARC, understands how these women feel. She says while it’s positive that Baby Loss Awareness Week is succeeding in breaking the silence, most of the coverage is of stillbirth and miscarriage. And because of this, there’s a gap in support for some couples.
“We worry that some women and partners are reluctant to ask for the support they may need because they ‘made a decision’ and so don’t feel they deserve help or to properly grieve their loss,” she says. “It is of course a very personal and private experience, but it should not be a shameful secret.”
Kim and Jenny have both since had “rainbow babies”, with Kim welcoming Connie into the family two years ago and Jenny giving birth to Emma just 10 weeks ago. But the pair are determined to ensure their experiences are not forgotten.
Jenny started an online community – called Baby Luke’s Legacy – to help other women. “You hear that statistic again and again that one in four pregnancies ends in miscarriage, but terminations for medical reasons aren’t included in that,” she says.
“I’ve always felt like Luke’s death isn’t as valid as other babies’ deaths, and a lot of mums who go through terminations feel the same. Are we part of that baby loss movement, or not? It’s important for me to raise awareness and let people know that your babies are just as valid.”
For information and support on antenatal screening and next steps, visit ARC’s website or call their helpline on 0845 077 2290 or 0207 713 7486.