SOMETIMES, the Jack and Jill nurses can be miracle workers.
When Conor Kelleher’s parents, Eimear and Richie, of Fermoy, had to act as bridesmaid and groomsman at two weddings on the same day, Joanne and Trish, nurses at the Jack and Jill Children’s Foundation, stepped up to the mark.
They ensured Conor was well looked after while his mum and dad fulfilled their engagements.
“When the nurses walk in the door, we walk out the door,” says Eimear, whose two-and-a-half-year-old son Conor was diagnosed with a very rare disorder, MPPH Syndrome, when he was six months old.
“Trish and Joanne are an amazing support to us and are part of our family,” says Eimear.
“They came into our lives after Conor’s diagnosis when Richie and I realised we needed more help. We were so involved with Conor; he was consuming our whole world.
“I met Eilin Ní Mhurchú, the Cork co-ordinator for the Jack and Jill Children’s Foundation. There were no waiting lists, no fighting to get into the system, no fighting for services. Within three weeks, we were in contact with the Jack and Jill nurses. Their level of support is amazing.”
The nurses step in to care for Irish children with life-limiting illnesses, making a difficult situation more manageable.
Eimer explains how their double booking at weddings in August “took a bit of planning and co-ordinating! The girls arrived into our home and took over. I get emotional talking even thinking about them.”
Things can be stressful for parents of a child who needs extra care.
“You know, you could accept not ever having a social life and just stay at home, order a pizza, and wrap Conor up in a blanket on the couch,” says Eimear.
“It is important for us to get on with our lives and, like all parents, we want to make our son’s life as happy as possible. We love him.”
Conor was born in Holles Street Hospital, Dublin, in December, 2018.
“He is a wonderful, happy, smiley, communicative little boy,” Eimear says. “He is amazing. Yes. We got the worse news ever. But he is so good.”
The sweetheart with the baby blue eyes and strawberry blond hair, who has a winning smile, has a healthy appetite too.
“Feeding Conor is a slow process,” says Eimear. “We need to be vigilant of his feeding at all times. He is a high-risk feeder. We always need to be vigilant to make sure we have the correct equipment and food.
“He loves his food and he is putting on weight and he is thriving, making good progress. He likes his yogurt and his Irish stew, which I purée for him and feed him. He is really healthy, which stands to him.”
The uphill daily struggle of caring for their precious first-born became easier to navigate with the 40-hour in-home respite care the Jack and Jill nurses provide for them
“Conor knows when the nurses arrive,” says Eimear. “He recognises their voices and he responds to Trish and Joanne. Conor gets it that when the nurses come in, mum and dad might be going out!”
Like all first-time parents in the happy bubble, Eimear and Richie marvelled at their baby boy, weighing almost 10 pounds.
“He was handsome, gorgeous,” says Eimear.
Six months late came the diagnosis. There are only 20 known global cases of MPPH Syndrome — Megalencephaly-polymicrogyria-polydactyly-hydrocephalus syndrome.
“Conor is still the same marvellous little boy, but after his diagnosis, for us, as parents, our whole world was turned upside down,” says Eimear.
“He has a complex diagnosis and it is a life-limiting diagnosis. Because MPPH is so rare, nobody can tell us what that actually means.”
She thinks back to his birth.
“I had a normal pregnancy, but a difficult enough birth.
"Conor was tongue-tied, and had to be released. That was quite obvious.
"He also had two extra digits which is quite common and he had a very large, unusual shape head which would indicate the ultimate diagnosis of the syndrome.”
Eimear adds: “The first six months of Conor’s life were unusual and normal at the same time. He thrived in his own way, put on weight and continued to get bigger. However, we were concerned with his head control and lack of real progression.
“He hated tummy time and didn’t seem to have the ability to hold his own head at all. He would regularly throw up after a feed, his eye contact was poor and his general movement was extremely limited.
“I was breastfeeding Conor and I went to breastfeeding classes. All the other mothers seemed to be driving on and I recognised there could be something amiss. But we were first-time parents, it was a very confusing time and we weren’t sure what was going on and thought things might level out. Often, I thought, maybe it’s me. Maybe I’m paranoid? Eventually we decided to bring Conor for tests.”
The paediatric physiotherapist advised them to see a neonatologist.
“It was around the time we were moving to Cork from Dublin,” says Eimear. “It was an extremely stressful time, with Conor going thorough rounds of tests, including metabolic investigation at Temple Street.”
Conor had an MRI in CUH.
“It was a huge noisy machine,” says Eimear. “The ‘dunk, dunk, dunk’ noise was very threatening. Conor was sedated and Richie was with him, which was just as well. I had an awful feeling when the nurse came out of the MRI room. I felt something was wrong.”
The parents were told to return the next day.
“We were all at sea,” says Eimear.
“It was a really difficult time. Polymicrogyria was initially diagnosed, a rare disorder that primarily affects the development of the brain and the size of the head.
“Conor’s subsequent diagnosis was MPPH,” says Eimear. “It was frightening. We’d never heard of it. It is exceptionally rare. It was random, with no rhyme or reason to it. There is no medicine available to help us manage the diagnosis, rather we treat the symptoms and try to help Conor as much as possible to ensure his life is as happy as can be. There is nothing we can do to change the diagnosis, it is what it is.”
The couple focus on the positive.
“We focus on what we can change, doing things for Conor and looking to the future. We love him and want to do everything to make him happy.”
His cousins make him happy.
“When his cousins come to visit, he recognises them. Conor notices them, especially when they startle him. He’s wondering who is that! He has very strong hearing.”
Even though Conor needs full-time care and even though he has a lot of challenges, his problems don’t overshadow his happy disposition.
“He is a wonderful, happy, smiley communicative little boy. He knows what he wants alright!” says Eimear.
“When he’s smiling and laughing, we say, ‘Isn’t that amazing!’”
She says family support and the Jack and Jill nurses are fantastic.
“When they rolled in, it was so refreshing and so reassuring,” says Eimear.
“The level of support, that you can mentally walk out the door, means so much. Something we often take for granted.”
Eimear, an accountant with the ESB, recently returned to work, and Richie has taken some time out to care for Conor on a full-time basis.
“Conor recently started playschool in Fermoy, which is an amazing achievement and not something I would have ever thought would have happened a year ago,” says Eimear. “A lot of this is down to the positivity and drive of Richie.”
The family took part in the ‘Go up the Hill for Jack and Jill’ event on Sunday. “It’s a great family day out when families get together,” Eimear says.
The fundraising challenge i in support of its nursing home care and in-home respite services for seriously ill children, and events take place throughout September and October. People can register and receive a fundraising pack at: www.jackandjill.ie
The Jack and Jill Children’s Foundation was established in 1997 by parents Jonathan Irwin and Mary Ann O’Brien when their son Jack suffered a brain injury soon after his birth and sadly died a couple of months before his second birthday.