Article from 2019/2020 Impact of Giving Annual Report
Kim Gascoigne and Sheri Sobrato Brisson consider themselves to be family. As Sheri’s former nanny, Kim played an integral role in helping care for her two children. So, when Kim and husband Chris welcomed their long awaited daughter, Kira, there was no question that Sheri would play a big role in her life. And when she was born with multiple life threatening heart complications including her heart outside of her chest, Sheri flew half way around the world, ready to help in any way she could.
Kira spent the first six months of her life at the RCH receiving life saving treatment. When told of the ‘extraordinary’ care Kira received, Sheri was inspired to give back to the doctors and nurses who saved her life. Sheri generously donated $30,000 from her charitable foundation, in her home country of America, to support programs on the Butterfly and Koala Wards; the two wards where Kira was a patient.
When Kim found out she was pregnant she was over the moon. It was the miracle pregnancy that she and Chris had dreamed of. After multiple IVF rounds and only one embryo surviving genetic testing, they were looking forward to finally becoming parents.
However, their celebration was short lived. At Kim’s 22 week ultrasound, they were given life altering news. Their unborn baby had a rare and life threatening heart condition that would require a series of surgeries throughout childhood.
“We were excited and planning for a normal pregnancy and healthy baby, and then the sonographer picked up that something was wrong with our baby’s heart. We were distraught,” said Kim.
A further scan a week later revealed a slightly better prognosis – their baby had a serious heart condition but one that required less surgery. They would be able to take their baby home for six months, before the first heart surgery was needed.
“After the second scan we received better news. Afterwards though, I was paranoid and was at my obstetrician’s office every week for the rest of my pregnancy, I was always petrified that something was wrong,” said Kim.
Just a few months later, their daughter, Kira, was born via caesarean section. Following the birth, Kira was briefly placed on Kim’s chest, before being whisked away to the resuscitation station. Doctors called Chris over, where he could see that something was very wrong; his newborn daughter’s heart was flapping under a thin membrane of skin.
Within minutes, doctors had called a code blue, intubated Kira and then moved her to the maternity hospital’s Neonatal Intensive Care Unit (NICU) in preparation to transport her down the road to the Butterfly Ward, the NICU at the RCH.
Kira was diagnosed with Pentalogy of Cantrell, a cluster of abnormalities which includes five different heart defects; a hole in the wall between the heart’s main pumping chambers, a valve between the heart and lungs that is too narrow, the right heart chamber with walls that are too thick, and a major blood vessel that is misplaced or moved. She was also missing a breast bone, and her heart sat outside her chest, covered by a thin membrane. Two days after the birth, Kim was able to see Kira properly for the first time.
“Seeing Kira in the NICU for the first time was awful. I didn’t know what was going on. I couldn’t pick her up, I could only touch her hand,” said Kim.
“It was very overwhelming. There were always lots of teams in with Kira, including the cardiology team, genetics team, dermatologists, plastic surgeons, neurologists – teams of people. There was also a lot of unknowns.”
The priority, they were told, was to keep Kira stable over the next four months and she would then undergo two heart operations once her body was more able to cope. The first surgery would be to fix some of the issues with the wiring and hole in her heart, and the other would be to place her heart back inside her chest. However, when Kira was three months old, her life saving heart surgery was brought forward.
“At three months Kira started crashing quite a lot and would turn blue; she was moved from the NICU to the Koala (Cardiac) ward in anticipation for her surgery, it was a very stressful time.”
The day Kim and Chris handed Kira over to heart surgeon Professor Yves d’Udekem was one of the longest of their lives. The complex surgery was made even more difficult, as once in the operating room Yves discovered that Kira’s heart was not only outside of the chest, it was rotated. This blocked all access to the abnormal structures underneath they needed to fix and doubled the length of the surgery.
Following the extensive surgery, Kira’s tiny heart was weak and she was placed on ECMO, which is a life saving technology that mimics the natural function of the heart and lungs, pumping blood around the body until the patient’s own heart and lungs are strong enough.
“When we were told about the difficulties the team encountered during Kira’s surgery, we felt sick, we were lost and helpless,” said Kim.
“It was even worse when we saw her. We could see the blood pumping through her body and into the machine, the lights were so bright, there were two technicians there and we couldn’t touch her.”
After three days on life saving ECMO, heart surgeon Yves started the staged procedure of closing Kira’s open chest.
“Kira had an open chest for about two weeks. She was missing her sternum so the surgeons were trying to bring it together slowly. They would close the chest more and then she would have an episode where she was crashing and they would have to undo their work, it was an incredibly stressful time,” said Kim.
“It wasn’t until three weeks after the operation that we were able to hold her properly, and then it took two weeks to wean her off all the drugs and sedation. It was horrible to watch her going through everything.”
Following the operation Kira spent another month in Rosella ward (paediatric intensive care unit), then a further 31 days on the Koala ward recovering from the surgery. Together Kim and Chris celebrated each milestone; Kira coming off ECMO, weaning off sedation and oxygen support, and most of all being able to take her for a walk off the ward as a family.
And finally, Kim, Chris and Kira celebrated a major milestone, spending their first night at home as a family of three.
“Kira was in hospital for 129 days, so being able to finally take her home for the first time was amazing. I remember Chris driving us all home together and thinking how bizarre it felt to be taking Kira with us,” said Kim.
Once they were settled at home, Kim’s close friend Sheri flew over from America to stay and help out, meeting Kira for the first time. It was this visit and Kim’s praise of the hospital, doctors and nursing staff that Sheri said was the catalyst for her gift.
“From the minute Kira was born, Kim posted Kira updates so even though we live nearly 8,000 miles away, I truly felt I was rooting for Kira and was there every step of the way. So, when I finally did meet her when she was six months old, I felt like I already knew her and had her before,” said Sheri.
“I am a philanthropist and my passion is children’s health. I support everything from medical research to psychosocial support programs in hospitals. So, I was already passionate about the vital role that children’s hospitals play. But to then find out someone who had helped raise my own children was receiving such extraordinary care from the RCH, I wanted to do what I could to give back.”
The donation, which was split equally between the Butterfly and Koala wards, will support a COCOON Nurse Coordinator position on the Butterfly ward and has helped fund the Music Therapy program on the Koala ward. The generous donation will not only benefit Kira, but hundreds of the most vulnerable babies and children for years to come.
Fast forward 16 months and Kira’s hitting all her developmental milestones and is a happy, adventurous toddler. She loves music, dancing and climbing and is always on the move. Her ‘zipper’ heart scar is the only indication that anything was ever amiss.
“Kira is incredible, she’s a little goer, she doesn’t stop – you even think anything had happened if you couldn’t see the scar,” said Kim.