Thursday, December 2

Unspeakable pain: breaking the silence around medical layoffs | The pregnancy


Silma and Binit had been married for two years when they found out they were expecting a “planned, unplanned” baby in December 2019. “We weren’t actively trying, but we knew we wanted to have a baby the following year,” says Silma, sitting in her garden in London. “So we were ecstatic. Really, really happy. ”Everything was normal in the 12-week scan in January, and they felt ready to tell their friends, family and colleagues. Silma is a pharmacist in a busy London hospital, Binit works in finance.

Fast forward to March 2020; The day before the couple’s 20-week scan was scheduled, the closure was announced. The local hospital they had booked into had already been badly affected by Covid admissions, as well as staff shortages, as doctors reassigned or self-isolated. “It was a bit of a panic,” says Silma, “so I went in on my own, thinking, how naive it was for me to think this, I was there to find out if it was a boy or a girl. He didn’t even want to know, in particular. I had always thought that was what the 20-week scan was all about. “Binit, who was not allowed to accompany Silma, was waiting outside. He is a soft-spoken man who speaks both of his feelings with his eyes and his silences as with his voice; he’s clearly still traumatized by the memory of that waiting.

Their baby, Mia, was moving too much for the sonographer to get a proper reading, but they could see enough to suspect a ventricular septal defect or a hole in the heart. As more tests were done in the next few days, more problems emerged: defects in the aorta, a potential problem with the aortic valve. Scanning for fetal abnormalities is extremely advanced, yet it can rarely reveal with absolute certainty what parents need to know: whether and for how long their baby will survive after birth; how much surgery you will need and what are the success rates.

Jane Fisher is the CEO of Prenatal Results and Elections (ARC), which helps parents after the scan results. “Once you’ve put the probe in, you can’t help but see what you’ve seen,” he says. “You can’t help but see a brain defect, not fatal, but horrible, very, very minimal brain function.”

“You won’t be able to survive some fetal abnormalities,” says Dr Brenda Kelly, consultant in obstetrics and maternal-fetal medicine at the NHS Trust of Oxford University Hospitals, “and in many ways, it’s easier to work. with them. If you can see that the fetus has developed without kidneys, you know that this is incompatible with life. But ventriculomegaly [enlarged ventricles of the brain]What does that mean for future development? “

At least 5,000 pregnancies a year in the UK end in a medically interrupted (TFMR). Three pregnancy charities: ARC, Petals and From Tommy – are trying to lift the taboo around the subject, after surveying more than 1,300 people who have gone through the experience. Almost three-quarters did not feel that their loss was treated as a miscarriage or stillbirth; They did not feel that they would get the same compassion or that they would be able to speak openly about their experience. Subsequently, 87% felt guilty, 80% isolated. While pain is the inevitable consequence of tragedy, the wall of silence makes everything worse.

“The endings have always been the hidden part of this whole journey, the embarrassing part that we really don’t want to talk about,” says Karen Burgess. the founder of Petals, whose experience as a counselor in the field of pregnancy loss is audible in her deeply compassionate voice. “So the parents are sucked into that emptiness, they feel like they have to hide from the shame.”

Samantha and Sam, from Bristol, discovered abnormalities in a 17-week scan; It was later confirmed that her baby’s skull was not developing and that she would not survive for more than a few minutes if she came to term. Samantha, who became pregnant naturally after a long struggle while they were about to embark on IVF, uses almost the same words as Silma: “In the 20 week scan, what can go wrong? Just find out if you’re having a girl or a boy. “

About half of couples do not even know what abnormalities a scan can reveal before receiving a diagnosis. But Fisher believes that the problem is not just a lack of public awareness. “Sonographers say, ‘If they had better information, it would be fine.’ It would not be. Everyone is completely devastated by the reaction they have. We get a lot of calls from women who are really shocked by how shocked they feel. They feel that it undermines the unconditionality of their love. That is still your baby. That they should still love it. There are women who feel that their entire identity has collapsed ”.

Suddenly, couples find themselves in a world of diagrams and complicated terminology, probabilities that cannot be clearly assigned to emotions. Kelly has to deliver bad news to parents “at least one Monday a month. It is as if the policeman is knocking on the door in the middle of the night. A part of you is doing a puzzle – you are collecting the bits and pieces to make a diagnosis and you are trying to figure out what the next test will be. A part of you is walking down a path, at three in the morning, in the dead of night, and you know that as soon as the door opens, you will crush the parents with the news that you are going to give them.

Depending on the accuracy of the estimated expiration date and the battery of additional tests, the time is now often very short. Twenty-four weeks is the legal limit for most breaks in the UK (except in Northern Ireland where a break between 12 and 24 weeks can only be done if there is a serious risk to the mother). After that, termination remains legal if there is a “substantial risk of significant disability”, which would be a physician’s decision.

Silma and Binit were already more advanced than they thought (22 weeks in the 20-week scan) awaiting the results of the genetic tests that would take 10 business days. The outlook looked bleak: Not only did Mia have congenital heart defects, but the cardiologists were also expecting problems with her lungs. Binit recalls being told about the possible results and thought, “Well, there may be a x% chance that the baby will survive all the surgeries and lead a normal life, but what if it isn’t? What if she is the percentage that does not pass open heart surgery? “Covid added a layer of uncertainty, as communications between departments were lost in chaos and labs were overwhelmed when processing coronavirus tests.” My fear was getting lost in the system due to all the Covid problems, ” Silma says.

“From a psychological point of view,” says Fisher, “people’s ability to deal with uncertainty was really affected by the background of the pandemic. They may have been able to cope with a bit of uncertainty, but it was too much. “

Silma and Binit decided to terminate their pregnancy on the weekend of week 22. On Monday, Silma went to work; after all, she was still a pharmacist and her team had never been so busy.

“On Tuesday, we went to the hospital thinking that everything would happen then, and that it would be over and over within the next day or so. And they said, ‘Did you know that you have to inject it into the heart to make it stop beating?’ And I said, ‘No, nobody explained that to me.’

This is a very common experience for couples who have what is known as a medical layoff, Burgess says. “There is not enough information about what it means. They are going through labor and giving birth to a baby. That has a massive impact; women are often unprepared for that. The partner will then say, ‘I don’t want that, there must be something else that can be done.’ They then go through what they call a surgical termination, which many hospitals cannot provide. Then the woman has to go find an abortion clinic. “

Kelly says, “These things are not discussed in a public setting because people find them in bad taste.” The “hardest part” of the process, he adds, is stopping the baby’s heartbeat. “It is indescribably tragic for the families who desperately wanted that child.”

Counselors in the field generally agree that if the hospital has the right level of support, the right facilities, a grieving room for delivery, so women don’t have to be among women carrying healthy pregnancies to term, a medical interruption. psychologically it is better than surgical. But that’s a lot yes, and there is an indescribable amount of trauma and anguish either way. When Silma went to bring Mia, they didn’t even know if Binit would be allowed to be with her; It was up to the staff that day (in the case, it was). No one clearly remembers the work – for Binit “it was a blur”; “I was completely numb,” says Silma. They could hear other women having or dating their babies. Mia died on April 3 and they said goodbye the next morning, a moment Silma begins to describe before feeling overwhelmed. Binit takes over, looking at Silma. “It was hard to see her. You couldn’t let it go. It was very difficult “.

Samantha, similarly, underwent a medical abortion, and then “we went into our shell. Obviously we had told our parents and very close friends, but I had not openly told many people that I had had a layoff, I just said, ‘We lost the baby. I really don’t know why. And does that matter? At the end of the day, you lost your baby. “

Silma and Binit “were open with everyone,” he says, and Silma’s colleagues in particular were a great source of support. “It is very different than if you have had a miscarriage or stillbirth,” says Silma. “It is not a natural death. You have ended the life of your own baby. I think the guilt was probably more intense after the autopsy and the funeral, but for me, it was when we started therapy that I recognized it and we only began to process what had happened then. “

If anything, the taboo around dismissal for medical reasons has become more, rather than less intense, with opinions particularly polarized around Down syndrome, which accounts for 20% of TFMRs. Most people who are diagnosed with Down still finish, and many feel locked in silence afterward. “This poses a challenge for all of us,” Kelly says, “trying to help families break the taboo. It has to come from both the profession and women who are brave enough to speak openly about their own experiences. “

Unspeakable pain is very isolating, never more so than when the parents have a subsequent and successful pregnancy. “The number of times they’ll have triggering events,” Kelly says, “whether it’s a scan or a throwaway comment. They cannot talk about an earlier pregnancy, nor do they even feel they deserve to have a later pregnancy. I am often the first and only person they can have that conversation with. So the complexity of her pain and trauma is enormous. “

More than that, the predominant fear shared by Silma, Binit, Samantha, and Sam was that their healthy baby would make them and others forget the baby they lost. Samantha is 33 weeks pregnant and says, “When people lose babies, they may think they don’t want to talk about it. But really, if someone asks me about my baby, I want to talk about her. I am reaching almost a year after losing her, and now I have another baby on the way. You worry about people forgetting about your first baby. “

“My main concern,” says Silma, “was that if we got pregnant again after Mia, would we stop thinking about her? Could we keep his memory alive? “Silma and Binit had a beautiful baby girl in June.” I think she has many of Mia’s traits, “says Silma.


www.theguardian.com

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