Spring Impact 2019
Seán's Heart Journey
Have you ever been so shocked that your entire body went numb? That’s what happened to me when I had my 20 week anomaly scan with my ﬁrst pregnancy.
The sonographer knew there was something up. They conﬁrmed that my tiny baby Seán had Tetralogy of Fallot, a congenital heart defect, and also had a very rare absent pulmonary valve. I didn’t know what to say. I didn’t know how to react. Less than three children are born a year in Ireland with an absent pulmonary valve and the outcome is very uncertain. My husband and I were devastated. We were just numb. It was so diﬃcult to process, especially as ﬁrst time parents.
The cardiac nurses from CHI Crumlin met with us before Seán was born and took us through everything that would happen, what we needed to bring with us and what we could expect. They were amazing. They really were our lifeline.
Seán was born on the 5th April and was transferred to Crumlin Hospital, but after four days they let us bring him home. We knew we would have to bring him back to be operated on, but he was doing so well he was allowed to go home. We were absolutely delighted, and terriﬁed at the same time. We had this tiny new-born baby with a heart defect and next thing we knew we were driving home with him.
He had his heart surgery when he was ﬁve months old. He left us at 10am and the operation was over at about 6pm. It was the longest day of our lives. After two weeks in the hospital he came home again and we had appointments at the hospital every two months, which then changed to every four months. Seán is going to need more heart surgeries as he continues to grow. He’s closely monitored by Crumlin, thankfully. He was just recently diagnosed with epilepsy as well which makes it harder.
Seán’s our little miracle. He has brought us so much joy, and we’re so grateful every single day for the lifesaving care he received at Crumlin. He wouldn’t be here today if it wasn’t for Crumlin. We are so grateful to CMRF and to the CMRF supporters, like you!
All of the research into cardiac conditions has already made a big impact for our baby. They were able to use tissue from Seán’s pulmonary arteries to make a valve instead of inserting an artiﬁcial one. He had open heart surgery, which was hard for all the family, but with research and time hopefully the surgery will be less invasive in the future. We know ﬁrst-hand the importance of investing in great care and medical research. Without that, we wouldn’t have our little baby boy. Thank you for investing in supporting little vulnerable babies, like Seán. He is our world.
Jennifer Griﬃn, Seán’s mum.
Dr. Damien Kenny - Helping Tiny Hearts
Dr. Damien Kenny went to University in UCD and then trained in paediatric cardiology in Bristol. He did his MD thesis there studying hypertension following coarctation of the aorta repair. He subsequently spent 5 years working in Chicago. Congenital cardiology is his ﬁeld, and his main focus is on interventional therapy, which involves keyhole surgeries or less invasive therapies to treat congenital heart disease.
“It’s a fascinating ﬁeld.” Dr. Damien Kenny said. “This year, the smallest patient we have intervened on has been less than 1.5kgs. What I like the most about my job is that I’m constantly challenged by it. I like working directly with patients. I enjoy the atmosphere in Crumlin. The team is amazing and we work together in a very cohesive manner and achieve a lot with limited resources. We are very supportive of each other and I think that ﬁlters down to the treatment, care and outcomes we achieve in the cardiology department.
“Ireland is at the forefront of new medical innovations and technologies. One of the areas we’re currently researching in paediatric cardiology is stents designed speciﬁcally for children. Most stents are made of metal which obviously doesn’t grow so you have a limited ability to be able to stretch the stents to a maximum diameter. We are trying to develop stents that potentially grow with the child. We are testing bioresorbable materials that will dissolve as the patient grows and allow, hopefully, normal function of the artery to resume in the child.
We’re also working on a valve with growth potential for patients with valve disease who would need to have their valves replaced. This procedure generally requires open heart surgery. We’re looking at using bioresorbable stents and stitching a valve inside with a particular material that will allow the patient’s own cells to either be seeded so that over time, while the scaﬀold is absorbed in the body, the leaﬂets are covered with the patient’s own natural tissue. We’re working with colleagues in Bristol on this collaboration. We’re also collaborating with UCD looking at 3D printed valves so that we can look at the speciﬁc anatomy and then generate a 3D valve that will grow with the patient – hopefully without the need for open heart surgery. I am hopeful we would be able to bring to patients potentially in the next ten years.
I’ve seen the beneﬁts from the funding CMRF has provided in a number of ways. The collaboration with UCD is funded in part by CMRF. We also have another project looking at the potential avoidance of surgery for pulmonary valve replacement thanks to CMRF funding. We recently performed some live cases (live streaming of surgery) for an international congress in Frankfurt. Because the visual is such a huge part of the learning process, and because the technology is advancing at such a rapid rate, it’s great to see that CHI Crumlin, through the funding provided by CMRF, is at the forefront of these developments. One of the major limitations holding us back from developing our unit further into a truly recognised international centre of excellence is lack of funding. Twenty years ago we were sending patients abroad for complex surgeries, but now, we’re really leading the charge with new and innovative technologies and approaches. Now, not only do we have it, we’re able to share it with our colleagues globally. CMRF have been vital in making this all happen. If I could say one thing to the CMRF Crumlin supporters, it would be thank you, thank you, thank you! Your support is the diﬀerence between good care and world-class care. We couldn’t do it without you!”
Dr. Damien Kenny - MD, FACC, FSCAI, CHI Crumlin.
Meet our fantastic fundraiser, Isaac Geoghegan!
Seven year old Isaac is one of our youngest fundraisers and raised an incredible €3,817 for CMRF Crumlin for taking part in the Mini Mucker challenge in Punchestown in October 2018. Isaac has been attending Crumlin hospital since he was one year old for adrenal insuﬃciency.
“I ran Mini Muckers with my brother Jack and my dad Tristan. My friends in the Beavers were cheering us on. I was really happy to help others kids in Crumlin who are more sick than me.” Isaac said.
“We were so shocked that Isaac’s fundraiser took oﬀ the way it did!” Margaret Geoghegan, Isaac’s mum, said. “We really hoped to reach the €300 mark, but people continued to donate. I did the Women’s Mini Marathon a few years ago for CMRF and was delighted Isaac wanted to help other sick children.
“Isaac needs medication to replace what his adrenal glands normally make. You need your adrenal glands particularly if you’re stressed or sick. We have appointments every three months, and they always make loads of time for us in Crumlin. Having that support takes some of the fear away. We know we’re not alone.”