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A hospice in the womb
When prenatal diagnosis brings bad news about their child, parents deserve a real choice of paths. Happily, there is a beautiful option available.
In a Melbourne maternity hospital last month a very shocking event occurred. A healthy, 32-week-old, wanted, unborn child was killed by a lethal injection when the sonographer performing the procedure mistook the child for its unhealthy twin. When the mistake was realised, the mother had an emergency caesarean section and the sick child was also terminated, according to news reports. The whole tragic episode left the mother traumatised and everybody involved distraught.
And yet, on the face of it this was an entirely avoidable tragedy. The sick baby had been diagnosed with a severe heart defect that would probably lead to its death soon after birth, but that in itself would not pose a danger to the other twin or the mother. A specialist consulted by MercatorNet said that if there was a risk for some other reason, at 32 weeks these babies could have been delivered, with a 99 per cent chance of survival for the healthy baby in intensive care, while nature took its course for the sick baby. An abortion was recommended, it appears, because that is the standard medical approach after such a diagnosis, even in a single pregnancy.
“This story is sad on so many levels. There could have been a better way,” says Amy Kuebelbeck, an award-winning American journalist whose third child had a similar diagnosis and who has written about her experience in a well-received book, Waiting With Gabriel. The “way” she is talking about is that of perinatal hospice, a model of support pioneered by another American, Dr Byron Calhoun, currently vice-chair of the department of obstetrics and gynaecology at West Virginia University-Charleston.
Perinatal (meaning, around the time of birth) hospice brings the principles of hospice care to those families who, as a result of prenatal testing, receive the heartbreaking news that their baby has a terminal condition. For those wishing to continue their pregnancy, embracing whatever life their baby may have, it provides a “hospice in the womb”. This includes planning the baby’s birth and looking into the question of whether medical treatment might be warranted, as well as more traditional hospice and palliative care at home after birth if the baby lives beyond the first few minutes or hours.
Palliative care teams can involve obstetricians, perinatalogists, nurses, neonatologists, social workers, clergy, genetic counsellors, midwives and therapists. So far, there are around 90 programmes based more or less on this approach in the United States and a handful in other countries. Not all are in hospitals.
Kuebelbeck and her husband did not have that support system available back in 1999 when they discovered, 25 weeks into her pregnancy, that Gabriel had a very severe, incurable heart condition. What they did have was their own instinct to “protect our baby until he was born and then protect him afterwards with comfort and love”, and a “marvellous” nurse who supported them all the way. And that was enough.
“All it takes is one person,” she says. “Ideally, you would have a multi-disciplinary team, an existing programme and protocol, and I hope that more hospitals will provide all that, but, in the meantime, if someone comes to them tomorrow with such a diagnosis, any healthcare professional can walk with the family in this way, and it’s a rational, healing, therapeutic, beautiful path.”
The voices of more than 100 mothers and fathers interviewed for a recent book that Kuebelbeck co-authored with psychologist Deborah Davis, concur. In, A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief, they talk about their suffering, yes, but also about the consolation of becoming a real parent to their baby during the months or weeks of pregnancy, the joy of actually meeting their child and holding him or her, however briefly, and the peace of knowing that they did the right thing. Here are just three of them:
“We made it a point to talk to our child as much as possible. We never missed a chance to tell him we loved him. One of my favourite memories of pregnancy is having my husband kiss my belly every night and tell the baby goodnight and ‘I love you’. A lot of love came from having this child. He showed us the true meaning of love.” ~ Donna
“Anouk was alive! It was our biggest fear that she wouldn’t survive the birth, and once we saw that she was breathing, we were in seventh heaven. We were grateful and so happy for every moment she was alive. Although I clearly knew that she was going to die, I was so happy. Joy filled the room around us, joy and peace…” ~ Monika
“If we had decided to terminate the pregnancy I would have dealt with pain, suffering, loss, and regret. By carrying Brayden until natural death I was able to love him longer, give him everything I could, and there is zero regret. You cannot avoid the pain, suffering, and loss either way.” ~ Camille
(This is a book to make you weep and rejoice by turns, but overwhelmingly the tone is serene and life-affirming rather than mournful or morbid.)
Thirty years ago maternity specialists were still awakening to the needs of mothers whose babies were stillborn or died soon after birth, but already a new need was growing among parents with a prenatal diagnosis of some fatal defect in their unborn child. The rapid growth of prenatal diagnostic technology over the past two decades far outstripped the ability to care for these families. Legalised abortion provided what seems to be a rational, humane response: bring forward the inevitable death, spare the mother the added grief of actually giving birth only to have the baby die, and let the family get on with their life, perhaps with the next pregnancy.
No doubt this was the recommended course for most, if not all the parents who speak to us in A Gift of Time. Some felt fully supported in their decision to continue their pregnancy, but others felt strongly pressured to terminate and one said she felt “abandoned” once she decided to continue. “Physicians are trained to do something,” says Kuebelbeck. “Termination feels like doing something. They are trying to save their patients from emotional pain, which is a noble motivation, but it doesn’t acknowledge the pain -- lasting pain -- that can come from termination. And it doesn’t acknowledge the beauty and healing that can come from continuing the pregnancy and embracing this little life.”
Even family and friends can fail to understand these things and add to the pressure to abort.
And yet there is no scientific evidence to support the presumption that terminating such a pregnancy is easier on the mother psychologically. On the contrary, as Kuebelbeck notes on the perinatal hospice website she runs, research to date suggests that women who terminate for fetal anomalies experience grief as intense as that of parents experiencing the spontaneous death of a baby. A recent study found that 14 months after the termination, nearly 17 per cent of women were diagnosed with a psychiatric disorder such as post-traumatic stress, anxiety or depression.
As for physical risks, in most cases fetal anomalies pose no greater risk to the mother than the normal risks of pregnancy. Abortion, on the other hand, has risks of its own, which increase as the pregnancy progresses. Where the baby’s condition poses a direct threat to the woman’s life, maternal-fetal medicine specialists are trained to try and save both patients. If necessary for the mother’s sake, the baby can be delivered prematurely and still be given comfort and treated with respect. Calhoun, who has documented outcomes for his perinatal hospice patients in two studies, reports that, out of a total of 61 patients, there were no maternal deaths or harm to the mother’s health.
An important consideration for fully informed consent by the parents is knowledge of what is involved in later -- and, as the Melbourne disaster illustrates, sometimes very late -- abortions. Methods include dismemberment in utero, and lethal injections to the heart -- sometimes in combination with the outrageous partial-birth abortion method which the baby is removed mostly intact except for the head. It was this barbaric practice, which came to light in the mid-1990s, that spurred Calhoun on in his efforts to provide something better for these babies and their parents.
Ah, but won’t the baby suffer more from prolonging its life? Naturally, this is a major concern for parents, but many life-limiting conditions are not inherently uncomfortable for the baby. (Elle reports in A Gift of Time how she would wake up in the morning feeling her baby as a heavy “lump” inside her, a sign she was curled up and deeply asleep. “I loved knowing that she was happy and safe inside,” she says.) If pain is a possibility it can be treated effectively, and it may be avoided altogether by careful decisions about medical interventions at birth. Enveloping the baby with comfort and love may often be enough.
In any case, says Kuebelbeck, when parents hear about perinatal hospice “they instantly get it, they recognise that’s the sort of help they need.” For their sakes, and although she has two teenage daughters and a day job, she accepts any opportunity to “evangelise” about this model of care. It has become a passion. Through writing and speaking engagements (MercatorNet interviewed her after she spoke at a conference in New Zealand) she encourages “a movement that is kind of bubbling up from parents who needed this support and didn’t have it, but who are trying to pay it forward and make things better for people coming after them.”
Calhoun’s published studies show that as many as 75-80 per cent of families will choose a perinatal hospice programme if it is offered them. But convincing healthcare providers that it is worthwhile is another story. In an article in the Linacre Quarterly last year he wrote that “healthcare providers as a group, unless trained otherwise, seem to be more in favour of termination than either the public or pregnant women. Some providers may wonder why resources should be wasted on a fetal demise. However, if patients are to be offered true choices and exercise autonomy, then real options need to be given.”
As Kuebelbeck puts it, “If you’re only given one choice, mathematically it’s not a choice.”
And the choice she believes most mothers and fathers in this situation will want to make is the one that honours their baby’s life and their capacity to love their child. “They just want to be parents.”
Amy Kuebelbeck lives in St Paul, Minnesota and can be contacted through perinatalhospice.org
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