Leah … From Heart Kid to Adult

Leah 1995 after surgeryThere has never been a dull moment with our now 19 year old daughter, Leah. She has always been full of surprises. Even before she was born she had the doctors scratching their heads over her heart condition. At the 18 week scan, they found that her heart was more on the right side and flipped over – a condition known as Dextrocardia. You know something is wrong when more and more doctors come into the room. Leah’s Dad turned to me and jokingly said, “I bet they are going to tell us her heart is on the wrong side”, which is what happened!

Knowing about her condition before-hand we travelled from Hobart to the Royal Women’s Hospital in Melbourne two weeks before the due date. Leah arrived on the 12th of September 1995 after 22 hours of labour and a caesarean. We were able to hold our beautiful baby girl only briefly before she was whisked away for assessment. Leah stayed in a humidicrib until they transferred her to The Royal Children’s Hospital (RCH) with her Dad, Michael, in tow. Leah was diagnosed with asplenia (no spleen), right isomerism (two right atriums with no wall between), pulmonary stenosis, a hypoplastic right ventricle, a complete AVSD where the valves were leaking and not formed properly and also Transposition of the Great Arteries (TGA). This meant she needed a series of operations leading up to the Fontan.

At one week old, tests showed that the pressures in her lungs were very high so they decided to operate and apply a pulmonary band. However, when they operated, the pressures had changed and they closed her up again. Seeing our tiny baby in ICU covered in tubes and wires for the first time was very traumatic, however over the years it has become a little bit easier. The nurses were wonderful during this difficult time especially with the double challenge of being new parents and having a sick child.

When we left hospital with our beautiful two week old daughter, we asked our doctor, “What do we do now”? His reply was, “Go home and treat your child as normal as possible and enjoy every moment with her”. Over the years, this is what we’ve done, in between many trips to Melbourne for operations, procedures and checkups. At one year old, she had a Bi-directional Glen Shunt, which is the first stage of the Fontan procedure. In July 1998 when Leah was three, we welcomed the arrival of her little brother Niam. Prior to the Fontan she needed an operation (LADDS procedure) to attach her intestines to the back wall of her abdomen. The bowel surgery was followed by a valve replacement and the insertion of a pacemaker. Leah had now undergone three surgeries in four months – a stressful time for us all. The Fontan was completed in 1999 when she was four.

Leah and the clown doctorAfter the Fontan it was wonderful to see her colour change from purple to a soft pink. No longer would people make comments like “Oh poor thing, she looks so cold” or “She is too young to be wearing makeup”. She had more energy and things were finally looking good. In 2007 at 12 years old, Leah had the relatively simple procedure of having the battery replaced in her pacemaker. However, after the surgery, she began having palpitations and less energy as a consequence of decreased heart function. She was prescribed medications to help maintain her health. By 2010 her artificial valve, which she received at three years of age, needed replacing.

Over the last few years, our doctors had mentioned that Leah would need a heart transplant at some stage, however we always hoped it wouldn’t happen. In 2013 her health began to deteriorate – fluid was building up in her abdomen (ascites), her energy levels were very low and she could not walk very far without becoming puffed. Most medications had been exhausted and despite all efforts of the doctors the heart was just growing tired. The only options left were high doses of diuretics and to plan for a transplant. As Leah turned 18 in 2013, there were discussions as to whether the transplant would happen at the RCH or the adult hospital. We were very happy when it was decided that Leah could stay at the RCH as we knew she would be under the best care possible.

She was assessed for a transplant in early 2014 and it was discovered that her liver was also in poor condition. The decision was made to go for a heart/liver transplant which, whilst a big shock, we understood would give her the best chance possible. We were positive but naturally apprehensive about the future. We moved over to Melbourne in order for Leah to go on the list. It was a difficult time for the family but this was made easier by the generosity of the Ronald McDonald charity which provided us with a flat near the hospital. This was very comfortable accommodation and a home away from home.

Leah is a very resilient young woman and copes with most situations. Even while waiting for the transplant she made the most of her time by exploring the antique and second hand shops with her Dad, volunteering at Vinnies and with HeartKids, as well as looking after other heart children at the hospital.

Leah in ICU after transplantLuckily we didn’t have to wait long and in the first half of 2014, Leah received her transplant. Because the heart surgery was very complex and 14 hours long, and the liver function better than originally thought, the liver was not touched. The transplant went very well and she remained in hospital for a month to recover. We remained in Melbourne for another three months for check-ups and fine-tuning the medication. Finally, after seven months we were able to return home.

Through all of this Leah has led a remarkably normal life. She has done well at school, commenced acting at eight and hasn’t stopped; has owned and bred a menagerie of birds; been on several camps for heart children and even went to Vanuatu to build a water tank for a local village as part of a school trip. She has developed a strong social conscience and wants to work with disadvantaged children. It seems that children who endure the challenges that come with serious medical issues compensate by working hard at everything they do and don’t give up. We often think that healthy children and adults can take a leaf out of a heart child’s life!

We continue to return to the RCH for check-ups (and the chance to catch up with friends) regularly. Since the transplant Leah has started enjoying life to the fullest and doing all the things she never imagined possible.

She has started doing gym classes, going on bushwalks and has just commenced an Arts Degree at the University of Tasmania.

Leah-Bushwalk to Pelverarta fallsWe are now facing the transition process to The Alfred in June for adult care. We will be very sad to leave the RCH. After more than 19 years, and despite everything that Leah has gone through, we look back with enormous fondness and gratitude for all the RCH has given us. We could not have reached this point without the wonderful team of cardiologists, surgeons, transplant co-ordinator, nurses, play therapists and HeartKids support group at The Royal Children’s. And of course, we shouldn’t forget all the families we have met along the way and the doctors and nurses in Hobart who have supported us. We are also thankful for having such a supportive family and appreciate everything they have done to help Leah.

We would also like to thank our beautiful, amazing daughter for just being her effervescent self. You have taught us to look at the world in a different way and appreciate every precious moment.

For those families just commencing their “heart kid journey”, it’s important to be able to look to children, sorry, adults like Leah and understand that there really is a very bright light on the horizon.

You are the light of our lives and we love you very much.

Love Mum, Dad and Niam

Victoria & Tasmania