When her parents placed baby Cara, now three, into the Children's Sunshine Home, they didn't believe she would see her first birthday, writes SHEILA WAYMAN
WHEN JOANNE Mahon Kelly was pregnant with her third child, she decided to bring her eldest daughter Mary, aged four, along for the 22-week scan at Holles Street in Dublin.
“It was kind of preparing her for the baby’s arrival,” says Joanne, who was working as a clinical nurse specialist in Peamount hospital and had been reassured at a 14-week check-up that all was well.
As Mary watched the ultrasound images of her new sibling, the midwife said she wanted to pop out to catch someone before they left for the day. Joanne knew immediately there was something amiss.
“If she comes back with a doctor I’m running”, was the thought going through her head. “She came back on her own and I kind of breathed a bit. But she was very quiet and I said to her, ‘Tell me, there’s something there’,” recalls Joanne.
“She said she was a little bit concerned at the baby’s femurs, that they looked bowed.” She had been out making an appointment for the next day with the senior obstetrician.
With “a golf ball in my throat”, Joanne struggled to maintain her composure for the sake of her daughter Mary as they left the ultrasound unit.
“I rang my husband and the moment I heard his voice, flood gates opened. My daughter took the phone off me and, at four years of age, said: ‘Dad, don’t worry – Mum’s a bit upset because the baby has crooked little legs’.”
The following day she and her husband Ken went in for the appointment, and there was an entire medical team there to meet them.
“Here goes,” thought Joanne. “I sat down and said, ‘I want it black and white, the way you see it’. If you know what you are dealing with, you can at least try to cope with it,” she reasons.
“They threw out things to me and all I heard was ‘not compatible with life’.” They thought it was campomelic dysplasia, a severe case of dwarfism, she says.
“If I gave birth, it would be 50:50 that the baby would survive, and then it would be a maximum of 12 hours.”
The one consolation to Joanne was that her baby’s suffering would be mercifully short.
The baby girl cried as she was delivered on July 13th, 2006. She looked perfect, “a chubby little thing”, and they named her Cara. She cried as the doctors examined her and Joanne remembers thinking “that’s not a normal cry. That’s a pain cry.”
They brought her up to ICU and Joanne found out later that a doctor had accidentally broken her leg in the initial examination, unaware of what they were dealing with at that stage.
Cara was put on morphine and in an incubator – due to the initial diagnosis, she was expected to have breathing problems but she only needed a little bit of oxygen.
The next day, the doctor informed them that Cara in fact had osteogenesis imperfecta, a severe brittle bone condition.
“Her diagnosis was different but her prognosis was the same: she was going to die,” says Joanne. Cara could survive two weeks or maybe two months, they were told, but she definitely would not see her first birthday.
After about six weeks, it was suggested that while they could not take Cara home, maybe they would consider moving her to the Children’s Sunshine Home in Leopardstown.
“I felt they were suggesting I couldn’t look after Cara. I wasn’t a fit mother. I couldn’t love her the way I should. This was all me,” she stresses. “I got very angry and upset. I held it all in but who do you take it out on, only your husband.
“He was great. He was Mr Logical, that was his coping mechanism. My mother was a great support as well and said, ‘You have to think of your other two children. It’s not that Cara is like a baby who is dying kind of normally’.
“A sneeze could break a bone; a turn the wrong way in the cot could break a bone. How was I going to cope with two other children at home like that when all my attention would be on Cara?”
After a lot of soul-searching and difficult conversations with Ken, she agreed to “just look” at the Sunshine Home.
The first thing that struck her was that it was a happy place. “It was bright and airy and butterflies were everywhere.” She and her late mother used to call Cara a butterfly, “so I said ‘right, that’s a little sign maybe’.”
The clinical services manager, Shirley Devitt, brought them round and showed them the family room, the sensory area, the nurseries, the children’s room, the TV room and the play areas. They went into the family room and Ken and Shirley were doing all the talking.
“I could hear parts, but I just kept staring at the patio door. It was a beautiful garden and a beautiful summer’s day. I knew they were talking about Cara coming in here. The lump was coming, the throat was tightening and the tears were welling.
“I could just hear Ken going, ‘Well?’ but I could hear the desperation in his voice. It had hit him too, Mr Logic. The dam burst and I just sobbed and sobbed and sobbed. We both did, the three of us, Shirley included.”
Joanne’s voice breaks and tears roll down her cheeks as we talk in the elegant, hushed surroundings of the drawing room in the K Club, not far from their home in Ardclough.
Three years later, the pain of taking baby Cara away from Holles Street and into the Sunshine Home to die, as they thought at the time, is still raw. A passing waitress quietly puts a wad of tissues on the table beside us.
Joanne’s voice drops to a whisper as she recounts the day they transferred Cara. “It was lovely, like a home from home – but it wasn’t her home. I couldn’t take it anymore and went into the bathroom and puked.
“I think I had realised then that it wasn’t that I was afraid of Cara dying. I saw Cara dying as a merciful release from pain and suffering. But the period in between terrified me.”
It is that “period in between” which the Sunshine Home supports families through, providing respite and end-of-life care for hundreds of children with life-limiting conditions. The building of the Republic’s first children’s hospice there will help them do that job better (see panel).
The word “hospice” is a knife in the heart, says Joanne. “It conjures up dying and death. But a hospice to me now is a holistic approach.” It is palliative, she stresses. It is about pain control and not taking extreme measures to prolong life, and it’s about dignity and comfort.
She had agreed to a Do Not Resuscitate order for her daughter at the Sunshine Home, to give her the dignity of a peaceful death.
“I didn’t want Cara’s agony prolonged any longer than it should be. I signed a form that they would not do anything extraordinary to prolong her life.”
Although Cara spent each week in Leopardstown, she was able to go home to Co Kildare for weekends, with the help of nursing care provided by the HSE and the Jack and Jill Foundation.
With Caras future so precarious, Joanne could not stand to be at the school gate with mothers who had been pregnant at the same time as her, talking about their babies.
“I suppose I distanced myself from my friends too, because I was like a mother of sorrows,” she laughs. “I had nothing good to talk about.”
Instead staff at the Sunshine Home became family and friends to her. There were times they had great laughs, at other times they provided a shoulder to cry on.
Cara got a chest infection that December and they were told that this was it. “We basically took her home then to die at Christmas.”
Joanne prepared her other daughters for their sister’s death. “I made a big deal about how Cara was going to become an angel. I made it like, ‘Fantastic – this is good news!’”
They rang in the New Year, with just family around them. She remembers looking out the window at the fireworks going off in the K Club, Cara still with them, and resolved to “pull my socks up and get on with it”.
Staff at Sunshine Home began to ask if they would consider taking Cara home full time. While that was what Joanne wanted, she was terrified too. “They knew I was becoming stronger, but needed a little push along the way.”
In June 2007, Cara went home for good, only returning occasionally for respite care. Looking back now, Joanne sees Cara’s time at the Sunshine Home as giving their whole family the foundation on which to build the rest of their lives.
“I got myself back together. I became more confident with Cara. I was able to give the girls somewhat of a normal life.” It allowed them all, she says, “to embrace what we had now. It saved me and my family. They taught us how to laugh again.”
While Aoife, who turns five next month, was really too young to understand what was going on, it was very hard on the eldest child. But Joanne laughs now at the memory of Mary, as Cara became stronger, turning to her one day and demanding to know: “Mum, is Cara going to become an angel or what?”
Fast forward to September 2009 and Cara “is a little lunatic”, says her mother fondly. “She’s tiny, very loud and very intelligent.” She celebrated her third birthday in July and attends playschool three mornings a week.
“We could have wrapped her up in cotton wool so easily but I didn’t want that for her. I knew she was going to fracture and she did, but she was living.”
She has fractured her femur six times so far in her short life, but the insertion of rods in her upper and lower legs has enabled her to walk around with the aid of a little Zimmer-type frame. She also uses a wheelchair. Permanently on painkillers, she has infusions every three months to help strengthen her bones.
But “she is the happiest little woman you could ever meet. She is so affectionate, she is just the light of our lives. It is heartbreaking to think what lies ahead for her,” says Joanne.
Cara is becoming aware of being different. When they were on holidays in Mayo this summer, the two older girls went horse-riding. Cara said to Ken: “Can I go on a horsey Daddy?” recalls Joanne.
“He said, ‘No chicken, you’re too young’. And she goes: ‘I’m too low’. It is now she is beginning to notice.”
Cara’s sisters have helped to bring her on so much, stresses Joanne. “They fight and they argue and I love that. I chastise Cara the same way I’d chastise a ‘normal’ three-year-old. She was so spoilt at the beginning! The other children have to see us treating her the same.”
What is the prognosis now? “It is perfectly liveable,” is how Joanne puts it. “There are complications that could raise their head in years to come. As she gets older and more active that could become problematic.”
For instance, if she fell and banged her head that could be very serious. Or if she fell and fractured her rib . . . But they don’t dwell on the “ifs”.
“They might never happen,” she points out. “There are people with osteogenesis imperfecta who are accountants and solicitors.”
“Cara is still our butterfly,” she adds. “She is still very delicate. She is what she is and we have to get on with it.”
Legacy of hope: the Laura Lynn story
“I am going to get fixed Lynnie,” were four-year-old Laura McKenna’s last words to her big sister Lynn in a phone call home before she went into an operating theatre at 4pm on August 30th, 1999.
But the surgery for a congenital heart condition, at Our Lady’s Children’s Hospital in Crumlin, turned out to be far from straightforward.
As her parents, Jane and Brendan, waited anxiously for news outside in the corridor that evening, they were also concerned about Lynn, who had come into the hospital with her father after school and looked very pale.
Brendan brought their 13-year-old daughter down to see a doctor in casualty. By 11pm that night, Lynn had been diagnosed with leukaemia and admitted to the oncology ward.
Laura died early the next day of complications from the surgery. Lynn had just one year and eight months more to live.
The utter heartbreak of losing your only two children is unimaginable. Jane McKenna first talked about it publicly in an interview with this newspaper in 2003, during which she said she was trying to set up the Republic’s first children’s hospice.
“The cheques started to fly in the door,” says Jane. “It was either do this now or send the people back their money!” The Laura Lynn Foundation was born.
Six years and millions of euros in donations later, the sod will be turned for the hospice today in Leopardstown, Dublin. Laura Lynn House is being built on land at the Children’s Sunshine Home, which joined forces with the foundation, and together they have raised €11 million.
It is hoped to have the hospice open early in 2011. More than 350 children die of life-limiting conditions each year in the Republic and the majority of those die in hospital.
While the hospice will be a wonderful legacy for Laura and Lynn, it is not being done for that reason says Jane. “What they would want is what it is for, and that is to help families.”
- Fundraising for the hospice continues. See www.sunshine home.ie or tel 01-2893151