Life-Limiting Conditions

What about where the baby has a life limiting condition and is not expected to live for long after birth?

  • These are babies with a severe disability, who are alive and kicking in the womb, but who have been diagnosed with a condition which means they may not live for long after birth.
  • Parents say that the time they have with their baby, however short, brings love and joy, and is a pathway to healing. They have called for better services to be made available so that they have the support they need to pour a lifetime of love into the time they have with their child. SEE some of their beautiful and inspiring stories below.
  • These babies are not ‘incompatible with life’. No baby is. This label, and ugly and misleading phrases like ‘fatal, foetal abnormality’, are used to dehumanise these babies – and to justify ending their lives because of their disability. These phrases are NOT a medical diagnosis and misinform parents when they are vulnerable and fearful for their baby.
  • It is a medical fact that there is no condition, none whatsoever, where a doctor can say that a baby will not live beyond birth. In fact, most of these babies, even with the most severe disabilities such as anencephaly, do live beyond birth, and they are valuable and precious just like any child. They are #CompatibleWithLove
  • Parents say that the negative language and misinformation used in Irish hospitals, as well as by abortion campaigners, can push parents towards abortion, and to a lifetime of regret. Recent research from Duke University found that women who undergo abortion after a diagnosis of anencephaly are significantly more likely to suffer depression and despair.

  

What do Parents Say?

   

REAL LIFE: Aileen and Lilly Ann

Yes To Life Project Page AILEEN 1400 wide

“They told me that she wouldn’t live after birth, but she did, for 6 days. When you are told you’ll get nothing, to get 6 days is a miracle. I’m so proud of Lilly Ann that she lived for 6 days. There were two things that I wanted for her: that she would feel the wind on her face, and that would be held and loved by everybody. People said they were coming to hold an angel.”

Aileen Behan, on her daughter Lilly Ann who lived for 6 days with anencephaly, as told to Every Life Counts

  

REAL LIFE: Tracy and Kathleen Rose

Yes To Life Project Page Tracy 1400 wide

“These are our most vulnerable children – children with the most severe disabilities – and we need to respond to them as we would to any child with a disability, with support and compassion and love for them and for their families. They are important in the way that every child is important. Their lives have meaning and their disability should not take away their right to life.”

Tracy Harkin, mother to Kathleen Rose, aged 9, living with Trisomy 13.

  

  • Parents are being horribly misinformed and pushed towards abortion at a time when they are very vulnerable. Parents need the right support – perinatal hospice care – to give them time with their baby. That time brings great joy, and healing after the pain of loss.

“You need to pour a lifetime of love into those few hours, but you will know that your baby knew nothing but love.”

Derbhille, mother to Clodagh who lived for 33 days with Trisomy 13.

  • A new (2015) study from Duke University by Cope et al has found that mothers who undergo an abortion after a diagnosis of anencephaly are significantly more likely to suffer depression and despair than those who continued with their pregnancy.
  • In contrast, recent research has found that almost 90% of parents who continued with their pregnancy following a diagnosis of Trisomy 13 or 18 said that their overall experience was positive, while 98% of parents described surviving children as happy and as having an enriching influence on their lives, and on their families.

 

    

Will these babies die before birth?

There is no medical condition where a doctor can say that a baby will not live until birth. Research in this area recently has shown us three important things:

  • There is no agreed category of medical conditions which can be described as fatal or ‘lethal, since for all these conditions research shows that children have lived beyond birth, sometimes for years. (2)
  • In fact, even with the most severe disorders, such as anencephaly, studies show that most babies do, in fact, live after birth and that parents will have time to make memories with their children. Research shows that 72% of babies with anencephaly live after birth, even briefly, while babies with Trisomy 13 or 18 have lived for weeks, months and years after birth. Parents should not be deprived of the love and joy that comes from this precious time. (3,4)
  • A recent Parliamentary inquiry in Britain, the Bruce Inquiry showed that parents came under pressure to abort if the baby had a disability and that parents felt they did not receive adequate information about other options, including palliative care after birth. Research by Janvier et alshowed that 93% of families of babies with Trisomy 13 and 18 had been told their baby’s condition was ‘lethal’ or ‘incompatible with life’ and more than two-thirds felt under pressure to abort. (5)

     

What Parents Need to Know

  • Parents say that families should be told that most parents who continue pregnancy have reported a positive and enriching experience regardless of the lifespan of their child. They had some time with their baby and that was truly precious.
  • This is borne out by research which has found, for example, that:
  • Almost 90% of parents who continued with their pregnancy following a diagnosis of Trisomy 13 or 18 said that their overall experience was positive, while 98% of parents described surviving children as happy and as having an enriching influence on their lives, and on their families. (Janvier et al 2012).
  • Mothers who undergo an abortion after a diagnosis of anencephaly are significantly more likely to suffer depression and despair than those who continued with their pregnancy, according to a new study from Duke University, published in Prenatal Diagnosis in 2015.
  • Babies with these conditions do not suffer in the womb or after they are born: parents are being horribly mislead in this regard. None of these conditions causes the baby in the womb to suffer pain. Any discomfort after birth will be managed by god palliative care.
  • Perinatal hospice care is the way forward to help families in this very difficult time – this support system for families is not expensive to provide and is hugely helpful. It simply means that parents are provided with the gift of time with their child by ensuring that they have the same medical team throughout the pregnancy and that special bereavement counsellors and midwives and photographers help baby and parents through this pregnancy and birth.
  • Research shows that, in jurisdictions where abortion was available, when perinatal hospice care services were explained and offered up to 85% of parents availed of them (Calhoun, 2003).

   

The Reality – Abortion

  • These are usually late-term abortions. The baby is either dismembered or given a lethal injection of potassium chloride into the heart, and the mother will then give birth to a dead baby.
  • These are not abortions for ‘medical’ reasons. There is no threat to the life or health of the mother, and abortion certainly brings no benefit to the baby. This is abortion for reasons of disability.

   

References

(1)  Cope, H.,Garrett, M. E.,Gregory, S., and Ashley-Koch, A. (2015) Pregnancy continuation and organizational religious activity following prenatal diagnosis of a lethal fetal defect are associated with improved psychological outcome. Prenat Diagn, 35: 761–768. doi: 10.1002/pd.4603.

(2)  Wilkinson, D.J.C., Thiele, P., Watkins, A., and De Crespigny, L. Fatally flawed? A review and ethical analysis of lethal congenital malformations. Br J Obstet Gynaecol. 2012; 119: 1302–1307

(3)  Jacquier M, Klein A, Boltshauser E. ‘Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.’ British Journal of Obstetrics and Gynaecology 2006; 113:951–953

(4)  Rasmussen SA, Wong LY, Yang Q, May KM & Friedman JM. (2003). Population-based analyses of mortality in trisomy 13 and trisomy 18. Pediatrics..111(4 Part 1):777-84.

   

And if you want more research on this particular issue

  • http://www.abortionanddisability.org/ – The Bruce Inquiry
  • Janvier, A., Farlow, B., and Wilfond, B.S. The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics. 2012; 130: 293–298
  • Guon, J., Wilfond, B.S., Farlow, B., Brazg, T., and Janvier, A. Our children are not a diagnosis: the experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18. Am J Med Genet. 2014;164A: 308–31
  • Calhoun BC, Napolitano P, Terry M, Bussey C, Hoeldtke NJ. Perinatal hospice. Comprehensive care for the family of the fetus with a lethal condition. J Reprod Med. 2003;48:343–348.

 

   

If you want to read more on this particular issue

Life-limiting disorders: Learn about the conditions – and read real stories

    

Anencephaly

Anencephaly is a serious neural tube defect which causes the baby’s brain not to develop properly. A recent study found that 72% of babies with anencephaly lived for a short time after birth. Of those children, 25% lived up to 5 days, while up to 7% lived up to 28 days after birth. (1) Two children – Stephanie Keene and Nicholas – lived in excess of two years. Kildare mother Aileen Behan’s little girl Lilly Ann lived for 6 days. She says “I was told that she wouldn’t live after birth, she did for 6 days.  When you’re told you’re going to get nothing, to get 6 days is just a miracle.  There were 2 wishes I had for her, one that she would feel the air in her face and one that she would be held and loved by everyone. And she was.”

(1) Jaquier M, Klein A, Boltshauser E. ‘Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.’ British Journal of Obstetrics amd Gynaecology 2006; 113:951–95

  

Potter’s Syndrome, Potter’s Sequence and Renal Agenesis – a breakthrough in care

Some conditions including Potter’s Syndrome, Potter’s Sequence and Renal Agenesis mean that a lack of kidneys or kidney development causes a decreased amount of amniotic fluid – which can also mean that the baby’s lungs fail to develop. It has tended to be associated with a very poor outcome but this is not invariably so, and a new treatment means the outlook may dramatically improve.

US Congresswoman Jamie Herrera Beutler was told that her daughter had Potter’s Syndrome and that “It’s 100 per cent fatal. She will either be stillborn, you’ll miscarry, or she will suffocate in your arms after she’s born”. But the Beutlers urged doctors to try an experimental treatment – injecting a small amount of saline into the womb to act as a substitute amniotic fluid.

Abigail Beutler, was born in July 2011, and is thriving, sitting up, chattering and playing with her adoring parents. She is awaiting a kidney transplant and her Dad, Dan Beutler, is a match. Abigail’s story may now change the treatment protocol for Potter Syndrome.

  

Trisomy 18

Trisomy 18 or Edwards Syndrome arises because of the presence of an extra chromosome. There is a significant risk of miscarriage but studies have found that, contrary to recent reporting, the average duration of survival for children with Trisomy 18 was 14.5 days; with 38.6% of babies surviving for more than a month, while 8.4% survived for more than a year. (2) Here in Ireland, Elaine Fagan, given just days to live after birth, spent 25 years with her loving family before her death in 2011, confounding all medical expectations. “She has touched so many people. I now know happiness comes from caring and sharing with others. I wouldn’t have found that out if I didn’t have Elaine. It’s thanks to her that I am seeing a lovely side of human nature,” said her father Micheal.

(2) Mitchel L. Zoler, ‘Trisomy 18 survival can exceed 1 year’, OB/GYN News, March 1 2003Trisomy 13 / Patau Syndrome

 

Trisomy 13

Trisomy 13 or Patau Syndrome also arises when the baby has an additional chromosome. Research has found that children with Trisomy 13 live on average for 7 days after birth, while almost 31% live for more than a month, and almost one in 10 live for more than a year. (3) Kathleen Rose Harkin, who lives in Cavan, has defied all doctors predications to celebrate her seventh birthday despite having Trisomy 13. “They say Trisomy 13 is incompatible with life, but Kathleen Rose is the love of our lives,” says her mother Tracy. “She shows us how to love.”

(3) Mitchel L. Zoler, ‘Trisomy 13 survival can exceed 1 year’, OB/GYN News, March 1 2003

    

Sometimes doctors get it wrong

In September 2014, the Daily Mail reported the story of a baby boy whose mother was strongly advised to abort since he was ‘fatally ill’. Robyn Wilson and her husband Adam were told ultrasounds showed the baby had a chromosomal disorder. They came under pressure to abort, with doctors in Jessops Hospital in Leeds going so far as to book an abortion and telling the couple that while it wasn’t compulsory, it would be for the best.

Robyn said she thought: ‘What would be worse? Having an abortion, or having the baby in my arms for just a few minutes or days, maybe weeks?’””

Baby Harry was born perfectly healthy. “The doctors and nurses couldn’t believe it,” his mother said. “They all call him ‘the legend baby.’

   

What is perinatal hospice care?

Perinatal hospice and palliative care is a new and compassionate model of support that can be offered to parents who find out during pregnancy that their baby has a life-limiting condition. As prenatal testing continues to advance, more families are finding themselves in this heartbreaking situation.

Perinatal means around the time of birth, and hospice incorporates the philosophy and expertise of hospice and palliative care into the care of patients.

When we hear the word hospice, we think of a building, but perinatal hospice is not a place. It is more a frame of mind. It’s about providing support to families and can easily be incorporated into standard pregnancy and birth care, and be made available in maternity hospitals and units in Ireland.

Indeed, in some centres in Ireland, this kind of care is made available but, right now, that provision is patchy.

In practical terms, perintal hospice care requires that obstetricians, nurses, chaplains, neonatologists, social workers, bereavement counsellors and even photographers work together to ensure that parents are given the gift of time with their children.

  

This ensures:

  • Continuity of care, so that the family has a dedicated team who are aware of the baby’s diagnosis and they do not have to explain their situation at every appointment – It also ensures that parents are properly informed about their baby’s condition – and are not misinformed either by medical staff, or by being told to look things up on google
  • That a special, separate room is made available for the family when their baby is born.
  • That counselling is available for families throughout the pregnancy and bereavement counselling is available afterwards
  • That palliative care ensures that any pain or discomfort the baby may feel is managed and minimised
  • That a special photographer helps to make memories for families
  • That a chaplain is available to baptise the baby if that is desired

All of this ensures that parents have the gift of time – that they can focus on spending every precious moment with their child, before and after birth.