Climbing a hill for Hannah
We will all face challenges in our lives, it’s as inevitable as the sunrise. How we meet those obstacles sets the tone for our lives.
Two-year-old Hannah Cassidy from Shercock is a shining example of how to persevere in the face of adversity. Twin Hannah was born with the chromosome deletion Q14. This syndrome occurs when part of a chromosome is missing. Chromosomes carry the genetic information that makes you what you are.Chromosomal deletion syndrome (CDS) can cause severe intellectual and physical disability, but Hannah is a fighter: “Hannah was detected as being very small 26 weeks into my pregnancy. We didn’t know what was wrong, but we were monitored very closely from that time on. Every two weeks, we had a scan. They knew it was not twin-to-twin syndrome because the babies didn’t share the same placenta,” mum Mary Cassidy says of her daughter’s first challenge.
This was Mary’s second pregnancy. Her other son, Killian (5), and husband Jonathan were very supportive at this time.
“Everyone told me one twin is always smaller than the other. But, when we started going to the Rotunda [for scans] we knew that it was not the normal course of events. We were told it was touch-and-go from 26 weeks on. The difference between twins can be 10% to 15%, but in our case it was 32%.”
Naturally there was a lot of concern in the Cassidy house at this time.
“The doctors couldn’t tell what was wrong. We would go in and have talks with hospital staff, they were preparing us for the worst. Hannah was growing, but very slowly. I was taken into the hospital at 31 weeks and was monitored every day.”
The twins were delivered at 35 weeks and four days, but what should have been a time of great joy was marked by great stress: “When I look back, it’s a bit of blur.”
Hannah was born weighing just 2lbs, her brother Jake was 5lbs 2oz. Both were taken to the ICU in the Rotunda. Jake spent one night there, but Hannah was in ICU the whole time the Cassidys were at the Rotunda.
“The nurses were very good, but I didn’t want to leave Jake on his own so I had to wait for Jonathan to come in before I could go to Hannah. After five days, Hannah was doing well and we were transferred to Our Lady of Lourdes Hospital, Drogheda. During that time, I was missing Killian. I was in hospital for nearly a month and he was in Mayo with his grandparents,” recalls Mary.
Hannah spent four months in the ICU in Drogheda: “It was tough going. It was tests day in day out. It was like living two separate lives. I was at home with a newborn baby and a two year old after having a C-section. I could not drive because of the section, so I had to rely on family and friends to be brought to Drogheda hospital,” Mary explained.
“The specialists in Drogheda were very good, but they did not know what was wrong. There was test after test after test. After weeks they discovered that Hannah had chromosomal deletion syndrome. That was double Dutch to me, but they explained it. They could not tell if she would ever walk, or talk or even feed unassisted, because it’s quite a rare condition.”
Hannah came home to Shercock after four months. She had a nasogastric intubation (NG tube), a plastic tube through the nose and down into the stomach for feeding and medication.
“I would get up in the night and feed her with a syringe putting these tiny drops of milk down into the NG tube. She would vomit the whole thing back up, so she was only a week and she was back in hospital again. Then she came home on a pump feed,” Hannah’s mother recalled.
At a visit to the hospital, the Cassidys were told they weren’t entitled to any home help.
“It wasn’t that I wanted help, I thought - it’s not that bad, I can do this. But one of the wonderful nurses in Drogheda hospital said that the Jack & Jill Foundation could help us out.”
In February 2018, Anne Reilly, the Jack & Jill Specialist Children’s Liaison Nurse for Cavan, came out to meet the Cassidys in their home and now the family has the support of two Jack & Jill nurses.
“They are amazing. They’re like part of the family now. We all look forward to seeing them. We are two years on now, but when they first came it was very dark days,” the quiver in Mary’s voice hints at the emotional strain she experienced in March 2018.
“I am just thinking back. I had a two year old, a baby in a bouncer, another with an NG tube and my husband working in Dublin, gone from early in the morning to late in the evening, five or six days a week. It was just so daunting.”
“It made such a difference to have qualified nurses help and give advice. They spend one-to-one time with Hannah. They do her feeds, they do physio with her, play and just interact with her - things that I may not have time to do every day. They give me time to get out of the house, go for a run, go shopping, take the boys to the park or to get their hair cut. Hannah is quite small and taking her out in the cold is not always practical,” says Mary.
The support is both functional and emotional. Hannah’s feeds can take an hour to an hour and half, and she has to be fed every three or four hours: “I don’t know where I would be if I did not have the support of Jack & Jill. They lighten the load, they give you someone to talk to.
“She is doing well now, she got a PEG in May 2019,” says Mary. The percutaneous endoscopic gastrostomy (PEG) allows nutrition, fluids or medications to be put directly into the stomach, bypassing the mouth and oesophagus.
“She is still not feeding orally, at all. She hasn’t fed since she was born. She interacts with us and she smiles. She is standing up, so she is doing very well, thank God.”
At two years of age Hannah is still the centre of attention: “She is very social. She loves her twin brother and her older brother and they keep a close eye on her.
“We don’t know how she will progress. We can’t tell yet if she will walk and talk or go to main stream school. Nobody can tell because it is such a rare condition. Every child that has CDS is different.”
Mary believes that Hannah has brought many people together: “It is tough going, and as they say life isn’t easy, but we have great support from family, friends, neighbours and the wider community. Shercock is a lovely community to live in. We got so much support since Hannah was born. I can’t single anyone out, because so many people have helped us.”
Hannah is one of eight children in Cavan assisted by The Jack & Jill Children’s Foundation. In the month of October, the Jack & Jill Children’s Foundation is asking people to support local and donate local by going ‘Up the Hill for Jack & Jill’. Funds raised will go towards the home nursing care of Jack & Jill children like Hannah with highly complex medical and life-limiting conditions.
The fundraiser is part of an appeal to fill a €200,000 funding gap and extend the age range of children supported by the charity from five to six years. Jack & Jill’s frontline home nursing care and end-of-life care is more important than ever, given the lack of respite options in the community for the extra-special children it supports.
‘Up the Hill for Jack & Jill’ will be very different this October compared with previous years. Due to COVID-19 restrictions, there are no big hill events being organised. Instead, participants must keep their challenge small, safe and local. People can walk, skip, jog, cycle or climb their chosen hill. Some are even opting to climb the stairs and count their steps at work throughout the month – the most important thing is to observe public health advice at all times.