A devastating diagnosis leads to disenfranchised grief for parents, but there is help

This is Baby Loss Awareness week, which culminates in a ”wave of light” at 7pm on Saturday, when people light candles in memory of lives lost too soon. For Yvonne, it is a week of particular poignancy. Still only 26, she has experienced what she calls “both sides”: her first, much-wanted baby, Noah, died late in pregnancy because he had Trisomy 18, a life-limiting genetic disorder. Almost unimaginably, after a seemingly healthy pregnancy, when her daughter Ayla was born it became obvious she was a very sick little girl. It took two months to get a full diagnosis.

Ayla is thought to be the only living child anywhere with both Down syndrome and Trisomy 18. She will be five next March.

Yvonne’s doctor suggested when Ayla was diagnosed that comfort care was the best option, to make Ayla comfortable until she died. No further medical intervention was advisable. Yvonne was devastated, but her protective mother instincts kicked in. She had already lost one baby and she was not about to lose another if she could do anything about it.

[ Breda O’Brien: Grief is the price we pay for love but we should not have to pay it alone ]

Thus began a battle that is still being fought four years later. As you can see from her Instagram, My Genes and Me, Ayla is a smiley, gorgeous creature, but there is no getting away from the complexity of her medical needs. She can stand unsupported, has important words like mama and baba, and radiates love for her brave Mammy, but her needs are enormous.

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Yvonne had to fight to get a nasopharyngeal tube inserted, which helped with Ayla’s breathing. She had a similar battle to get inserted a percutaneous endoscopic gastrostomy tube (commonly known as PEG feeding).

Ayla is in a specialist playschool in Carlow, a 45-minute drive from their Wicklow home, but cannot access the physio there that other children get because she is outside the catchment area.

Why do we torture families already under tremendous pressure in this way?

Yvonne is grateful to the healthcare professionals who sustain Ayla on her many trips to hospital, but she depends on her family and a network of charitable organisations for support and practical help. For example, the Jack and Jill Foundation provides her with 20 precious respite hours a month. Little Blue Heroes made Ayla an honorary garda and have given her a garda buddy. SOFT, an organisation for those with Trisomies such as Edwards syndrome has helped, as has Rare Diseases Ireland. But one organisation stands out for Yvonne – Every Life Counts (ELC), and its family liaison coordinator, Vicky Wall.

[ Breda O’Brien: State failing children with Down syndrome ]

Wall is also a member of that club to which no one wants to belong. Her little daughter, Liadán, had Trisomy 18 and was stillborn at 32 weeks. This painful experience has left her uniquely positioned to hear, understand, accompany and support other families going through similar experiences.

The loss of a baby leaves people bereft but can also lead to what author Kenneth Doka calls disenfranchised grief, when “grief is not openly acknowledged, socially validated or publicly mourned”.

Another mother, Sarah, whose baby Isabella died at 54 days, spoke to me about ELC being a family: a raw, cards-on-the-table space where people can openly grieve, knowing that it is safe to do so. But they can also express pride, joy, and love for this little person who has utterly changed their world.

Sarah says that one of the worst aspects of losing a child to a life-limiting condition, or living with a child with a life-limiting condition, it is the way these babies are sometimes viewed by society as less precious.

Despite advances such as national standards for bereavement care following pregnancy loss and perinatal death (which ELC was involved in preparing), services are patchy at best. UCC’s Pregnancy Loss Research unit released shocking statistics this week on the level of care people receive. For example, 26 per cent of people who experienced a second-trimester miscarriage, a stillbirth or an early neonatal death rated their care as “fair to poor”. Nor are healthcare professionals properly prepared for death in or around the time of labour or after birth – 84 per cent were found to have received no training to deal with it.

[ Breda O’Brien: Independent review crucial in Baby Christopher case ]

Organisations such as ELC are vital in helping families to negotiate a devastating diagnosis. It paid for a nebuliser that reduced the number of Ayla’s trips to hospital dramatically. ELC provides everything from babygros that fit a one pound baby to hand-knit toys and butterflies for parents to place with their baby or retain. Help with birth plans, memory-making and anticipatory grief is provided, and support is given for years after if needed. ELC also sends care packages that are unique to each situation before a baby is born. Medically accurate and beautifully presented booklets are included to help inform and reassure parents who are sometimes simply told to “go home and Google” for information after their baby is diagnosed.

As Yvonne says, there is no hope on Google, only darkness and despair. Sadly, this is also the case with some healthcare professionals, who should know better, although others are sensitive, empathetic and supportive. Whether or not families receive adequate care from the medical profession, ELC is always there to provide hope, help and healing.