Teaching parents to accept
Ireland’s first Down syndrome liaison nurse has worked with 120 families since her appointment in June 2009, and there are plans to extend the service throughout the Republic, writes MARESE McDONAGH
FEAR OF the unknown is probably the most common emotion among parents of newborn babies diagnosed with Down syndrome, according to Angela O’Riordan.
Ireland and probably the world’s first Down syndrome liaison nurse, O’Riordan was appointed to the National Children’s Hospital in Tallaght in June 2009 and since then has worked with 120 families, the majority of them from counties Dublin, Wicklow and Kildare.
The charity, Down Syndrome Centre, which funded her appointment, is hoping to extend the service throughout the Republic.
“Other emotions associated with receiving a diagnosis of Down syndrome are sadness, guilt, disbelief that this has happened to their baby, and anger,” explains O’Riordan.
She believes it is important to acknowledge these feelings and to reassure parents that they are “normal” and to remind them that they are having difficulty accepting Down syndrome and not their baby.
“The emotions are similar to bereavement for the loss of the baby they were expecting, but it is important to explain that in time they will have new hopes and dreams.”
She advises parents to focus on the baby and to enjoy every stage, without looking too far into the future.
The liaison nurse usually meets parents in the maternity hospital soon after the baby is born and her job is to provide a link between family and the medical professionals for the first year of the baby’s life. Providing information and practical and emotional support can involve home visits or phone calls, depending on the family’s wishes.
Often at a first meeting, parents are tearful, and express feelings of hopelessness and despair, says O’Riordan. “They also feel guilty for having these negative emotions and maybe also be blaming themselves for something they have or have not done during the pregnancy,” she explains.
One of her first jobs is to reassure parents that Down syndrome occurs incidentally and is not because of something they have done.
The condition, estimated to affect one in every 564 babies born in Ireland, is the most common cause of learning disability and occurs when a baby is born with an extra chromosome. Women over the age of 35 are regarded as being at increased risk of having a baby with Down syndrome, but O’Riordan has worked with mothers who were in their 20s .
Very often the condition is linked with health issues such as problems with heart, hearing, vision, muscle tone, thyroid and growth.
Once they come to terms with initial diagnosis, parents are often thrown into a whirlwind of hospital visits, surgery and ongoing medical problems.
“If a baby needs surgery in the first few months of life, then Down syndrome can take a back seat while parents deal with more urgent issues,” explains O’Riordan.
As a result, parents sometimes don’t seek information about Down syndrome until their child is six months old. In other cases, parents have been too overwhelmed by the diagnosis to take in all the information supplied in the maternity hospital and O’Riordan’s job is to brief them and to provide them with practical help as well as to explain the services available to them.
Jennifer Rushe from Bray, Co Wicklow, was shocked when her son Cass was born seven months ago with Down syndrome. “I was 34 so was not considered a huge risk,” she explains. She herself made the diagnosis. “I looked into his face and I could see it, so I asked for the obstetrician to come back into the room,” she recalls.
Because Cass has none of the health problems associated with many Down syndrome babies he has in fact reached some milestones quicker that his older brother, Milo (3).
“He is being breastfed, which I am told is unusual for a child with Down syndrome because many have poor muscle tone and cannot attach,” says Rushe.
“He is a great baby. He sleeps through the night. He was rolling by three and a half months, earlier than Milo, and he loves people. He stares into your face and tries to talk back to you – just like other babies. In fact, what some people may not realise is that he is so ‘normal’.”
She feels passionately at what she sees as a social non-acceptance of her baby’s condition in countries such as the US, where many parents choose termination rather than having a Down syndrome baby. “I think it is so sad that people in some countries don’t realise how normal this is. At least in Ireland people are more enlightened.”
For Rushe and her husband, Chris Kane, the service provided by O’Riordan has been invaluable, especially last January when Cass was being treated for pneumonia in Tallaght hospital.
“Angela came in a few times and I think because I know this is her speciality I find it so reassuring to talk to her,” says Rushe. “She also listens – she doesn’t just spew facts at you.”
Rushe doesn’t believe in anticipating problems down the road. “We don’t worry about Milo’s future and we don’t worry about Cass’s.”
Part of O’Riordan’s brief is to make parents aware of the early intervention services, such as physiotherapy and speech and language therapy, available all over the country and which are vital for children with Down syndrome.
“People are so afraid of Down syndrome because it is a lifelong disability but when Cass was in Tallaght and I saw other children with life-threatening illnesses, I just thought, touch wood, at least he will not have to deal with anything like that,” says Rushe.
A former fashion designer with Reebok, she had always planned to take a few years out to look after her small children and is thankful now that she is in a position to do that.
“I am also lucky that Angela is there and no matter what worry we have or what information we need, we know we can go to her.”
Down Syndrome Centre is running a Buy My Dress fundraiser on Saturday, May 28th, at venues in Dublin, Cork, Limerick, Galway, Castlebar, Gorey, Tralee and Kilkenny when dresses donated by thousands of women of all ages and sizes will be sold in aid of specialist nursing care for parents of babies diagnosed with Down syndrome.