At any one time in Ireland there are up to 600 people on the active waiting list for organ transplants and with Organ Donor Awareness Week running until April 30th the Irish Kidney Association in partnership with the HSE’s Organ Donation Transplant Ireland are hoping to do so People who are aware of the importance of organ donation and how it can save lives.
Sarah Duke knows only too well what this can mean for a family, having not only experienced the stress and anxiety of having a child on the transplant waiting list, but also gone through the process herself when making a living donation for her became daughter. Cleo, who is now six years old, was born with a condition called biliary atresia (a rare disease of the liver and bile ducts that occurs in infants) and although there were no signs of any discomfort at first, as the weeks went by, it passed it turned out that the little baby had some difficulties.
“My pregnancy with Cleo was uneventful except for the last few weeks when I was told she was no longer growing so it was decided that I would be initiated at 39 weeks,” says Sarah. “No one was concerned about this as I don’t think it’s an unusual event. Then when she was born she seemed fine and after all the routine baby checks we were cleared so we went home.
“I noticed from the start that she was very irritable, but I put it down to the fact that she was quite young and would apologize for any little issue, like the rash she got on her body. So when I took her to the public health nurse for a weigh-in, I wasn’t expecting to be told there were any problems – but she did mention that she looked a little jaundiced. I hadn’t noticed it myself, but sometimes when you’re too close you don’t see it. The nurse also asked if her stools were pale – she asked me to describe their color and I pointed to a yellow wall. She didn’t respond to this (not to sound alarmist) but advised me to take her for her 6-week pediatric check-up before Christmas as I had planned to leave her until January.”
Sarah, who is married to Phil and has two other daughters – Nina, 11, and Joni, 9, – began to feel a little uneasy about the recommendation that Cleo be checked sooner rather than later. After doing some online research herself, she became convinced that something was seriously wrong. But when she went to the appointment just before Christmas 2015, she wasn’t prepared for “everything to start right away.”
“Phil was in America for work, so I took my dad to Cleo’s appointment,” she says. “Very quickly it became clear that something was wrong as all the chief honchos were called down to look at them and many tests were carried out. At one point she was taken for a brain scan, fearing her clotting factor was out of balance and she might have developed clots in the brain. It was a really scary time and so much happened in that one day.
“I was so stressed and had to call Phil to get him back from the US. We didn’t have an official diagnosis at this point, but everyone was talking about Biliary Atresia. We were sent to Temple Street to wait for a bed in Crumlin as that’s where the pediatric liver specialists were and about six days later we were moved and immediately the liver team came in and they did a lot of tests and we got the official diagnosis.
“It was Christmas Eve 2015 and we were told she would have to go to the UK to have a procedure to ‘buy her some time’ but ultimately she would need a transplant.” On New Year’s Eve 2015, Sarah and Cleo went to bed to London for specialist treatment and over the next few months the baby was closely monitored to see if the procedure was successful in order to delay the need for a transplant. Unfortunately, it soon became apparent that she would need a new organ sooner rather than later.
“As the weeks went by, it was obvious the procedure hadn’t worked and Cleo was getting sicker and sicker,” says Sarah. “So in the spring of 2016 she was put on the transplant list and I remember feeling like it was all completely out of our control.
“As a parent you are obviously very concerned about your child needing an organ but at the same time you are waiting for someone to die which is really horrible. We were on high alert the entire time and could never be far from the phone. I felt like going insane.
“It was such a difficult situation that we decided to consider the idea of a living donor and it was quickly decided that I was the only real option because every other possibility in the family was male. Phil, his brother and my brothers are all big boys and couldn’t be included on the list as their livers would have been way too big for a small baby. So if anyone would be the donor, it would be me.”
After making the decision and being found to be well suited, a date was set for the transplant and Cleo and her parents returned to the UK for the operation.
“In September 2016, me, Cleo and Phil went to King’s Hospital in London where I would donate part (lobes) of my liver to her,” she says. “The operation was a success and we were there for a month as this is the period when an organ recipient has the highest risk of rejection. And as there is no pediatric liver surgeon in Ireland we would have been too far away in this case if she needed urgent treatment.”
“It was awful leaving the other two girls but my brother Thomas and his wife Fiona took them in permanently, even though they have four children of their own – they drive from Glasnevin to Lucan every day to take them to school. It was incredible what they did for us and we will forever be grateful to them.
“Cleo had a very slight shedding (on the organ) at first, which I think is very common, but within a few days she was really good. It took me a lot longer to recover as I think the donor often does because you go in as a healthy person with no pain compared to a transplant patient who comes in feeling really sick and with a new organ wakes up feeling great.”
It took the mother of three almost a month to recover and her little girl was getting better by the day. Now, almost six years later, they’re both doing very well transplant-wise, but Cleo still has a number of issues.
“It was amazing to see Cleo recovering and now she’s doing really well. But because her immune system is weakened, she’s prone to infections,” says Sarah. “Obviously we have to keep a close eye on her liver and she was having major problems with her tonsils and adenoids so she was on a ventilator at night as she had quite severe sleep apnoea. But just before the pandemic, she had both her tonsils and adenoids out and has been amazing ever since. We were very concerned that she might catch Covid but of our family of five she was actually the only one of us who didn’t. She’s a real fighter – an incredible little girl. Nothing seems to take her pen. Whatever she needs to do, whether it’s blood work or whatever else she needs to do, she just keeps going.
“We feel so incredibly lucky as everyone has been just amazing to us the whole time. From the counselors to the psychologist, the nurses and everyone else we dealt with in the hospitals, they were just amazing. Also the other families we met along the way have been a huge help – because while family and friends have been absolutely amazing and want to do whatever they can to help, it’s a really big help to be able to talk to someone who is doing something similar went through. And I would advise anyone who finds themselves in the same situation to try and find others to talk to, not look up stories online like I did and it’s not helpful – every situation is vastly different.
“Despite everything she’s been through in her life, Cleo is doing great and we feel so lucky and grateful for everyone who has helped her get to this point.”
The Irish Kidney Association encourages the general public to show their support for the campaign by organizing their own awareness activities and challenges. You can request organ donor cards on site ika.ie/donorweek2022
ABOUT ORGAN DONATION
⬤Organ Donation and Transplant Ireland (ODTI) was originally formed to help and provide resources for organ donation and transplants in Ireland.
⬤Organ transplantation means the removal of an organ from one body and its resistance in another body. Some organs can be taken from either a living person (living donor) or from a patient who has died in hospital from other causes (deceased donor).
⬤To become a donor, simply sign a donor card and ask your next of kin to sign it, indicating their willingness to accommodate your requests.
⬤You can choose which organs you want to donate.
⬤You can download the digital organ donor card app now.
https://www.independent.ie/life/health-wellbeing/health-features/my-baby-daughter-needed-a-new-liver-to-survive-so-i-gave-her-part-of-mine-41583438.html “My little daughter needed a new liver to survive – so I gave her part of mine.”