PARENTING: by Terri M. KelleherNews Weekly
Caring for terminally-ill unborn babies
, March 17, 2012
A medical bungle at Melbourne’s Royal Women’s Hospital last November resulted in an unborn baby boy inadvertently being killed in place of his twin brother who had been diagnosed with a heart defect.
The sick twin was then also aborted during a three-hour-long caesarean section operation. Such a double tragedy occurred because, on diagnosis, the decision was made to abort the sick baby rather than for him to be carried to term (Herald Sun, Melbourne, November 24, 2012).
It is doubtless very traumatic for parents to be told their unborn baby has a terminal condition and will probably die soon after birth. Whichever decision is taken — whether to carry to baby to natural birth or to abort it — there is bound to be suffering, loss and grief.
This is a huge life challenge. However, in recent years, a clever and innovative concept has been developed which offers a highly positive and life-affirming way to deal with it.
The term perinatal hospice or “hospice in the womb” came from a paper co-authored by perinatal palliative care pioneer Dr Byron Calhoun and published in the American Journal of Obstetrics and Gynecology in 2001.
Termination of pregnancy had long been the “de facto management of choice” in the case of terminal foetal conditions, primarily because it was favoured by health-care providers rather than by pregnant women or the public in general.
Dr Calhoun and his co-authors posited that if proper care and support were offered, many people would choose it over abortion. A small British study (A.C. Breeze et al, 2007) showed 40 per cent of parents who were offered perinatal hospice support chose to accept it and carry the baby to birth. In a small US study (Calhoun et al, 2006) the figure was 75 per cent.
In 1999, American journalist Amy Kuebelbeck’s baby Gabriel was diagnosed with an incurable heart condition at 25 weeks. There was no formal support program of perinatal palliative care at the hospital she attended, but she received support to continue her pregnancy from one member of staff.
Kuebelbeck described her and her husband’s experience in her book, Waiting with Gabriel: A Story of Cherishing a Baby’s Short Life (2003).
In 2006 she set up the website www.perinatalhospice.org which explains the whole concept and lists the hospitals, mainly in the US and Canada, which have such hospice programs. There are also programs in the United Kingdom, Italy, France, Poland and Nicaragua, but none in Australia.
The website describes a perinatal hospice as “an innovative and compassionate model of support that can be offered to parents who find out during pregnancy that their baby has a terminal condition”.
With rapid scientific advances in pre-natal testing, more and more families are finding themselves confronted by this heartbreaking dilemma.
The support begins at diagnosis, not just when the baby is born. It includes birth preparation and preliminary medical decision-making, including medical treatments intended to improve the baby’s life before the baby is born.
Also provided is hospice or home palliative care after birth if the baby lives longer than a few minutes or a few hours.
It entails a comprehensive team approach involving obstetricians, perinatologists, labour and delivery nurses, neonatologists, National Institute of Intensive Care (NICU) staff, chaplains/pastors, social workers as well as genetic counsellors, midwives, therapists and traditional hospice professionals.
The San Diego Hospice Early Intervention Program is considered a model of excellence in perinatal hospice care. The program includes:
• Developing a birthing plan that includes the family’s preferences for medical treatments for the baby at birth.
• Assistance with finding counselling and resources to help the family cope during the pregnancy and after the birth and death of the baby.
• Addressing the emotional needs of other children in the family.
• Guidance and support in finding hope amidst the family’s grief.
• Supporting the needs of the baby and family while hospitalised, and assisting staff in coordinating care and with discharge planning if appropriate.
• Helping create ways to celebrate the birth and welcome the baby to the family in hospital or at home.
• Assisting in creating keepsakes and treasures after the baby’s birth, e.g., handprints, photos, locks of hair.
• Providing referrals to support groups.
• Helping make final arrangements, memorial services, goodbyes.
• Providing bereavement support for the family and other loved ones for a minimum of 18 months after the baby’s death.
The perinatal hospice is a model of compassionate care. Kuebelbeck says when parents faced with a diagnosis of a terminal condition in their unborn baby hear of it “they instantly get it, they recognise that’s the sort of help they need.”
Another advantage is it does not take much to set up. There is no great technology needed, nor medications, other than what would normally be available. It is a change of mindset, a different thought process, that is needed to change the focus to living life to the fullest extent possible rather than aborting it because it will not be very long nor achieve the hoped-for dreams. And the expectations of parents are generally modest and achievable — “a bit of time with their babies… to hold their babies, to sing them a lullaby”.
For her recent book A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to be Brief (2011), which she co-authored with psychologist Deborah Davis, Kuebelbeck interviewed more than 100 mothers and fathers who have faced this heartbreaking situation.
They spoke of their suffering and anguish but also of the joy of meeting and holding their baby and of the consolation of being able to be a real parent to their baby for his/her brief life. Most importantly of all, they spoke of the peace of knowing they did everything humanly possible to love their child.
Legalised abortion may appear to provide a rational, humane response to diagnosis of a fatal defect in an unborn child. But it deprives the parents and family of actively embracing the brief, shining moment of their baby’s little life.
People who are pro-life need to spread the word about this beautiful alternative to abortion in the case of foetal abnormality.
Those who would oppose the spread of perinatal hospice care cannot be pro-choice because if the only option is abortion or abandonment by the medical professionals and society generally, then there is no choice.
As Kuebelbeck expresses it, “If you’re only given one choice, mathematically it’s not a choice.”
Terri M. Kelleher is Victorian president of the Australian Family Association.