Real Life

Ollie's Story

"The day we found out I was pregnant, we were so happy. It was time to start our family. My pregnancy was average, all my scans and prenatal check-ups were normal, until my 28-week appointment at the hospital. The nurse told me I had gestational diabetes and my baby had developed an ectopic heartbeat.

I remember an awful feeling of worry came over me, but the nurse assured us that it was quite common and that in most cases it would go away when the baby was born. She gave a referral for further testing. The wait time was 3 weeks but I had unfortunately gone into spontaneous labour at 29.6 weeks gestation.

The days leading up to the birth, I was in Liverpool hospital. Drs and nurses kept a close eye on me, as my baby’s heartbeat was quite sporadic. I had two caesarean scares and a small haemorrhage before I gave birth to Ollie with my partner and my mum by myside along with a room full of people; midwives, an anaesthetist, a doctor and a team from the NICU.

Ollie was born on the 3/1/17 at 1.7kg, with a lot of fluid and dropped to 1.4kg at his lowest weight. As soon as he was born my partner cut the cord and then Ollie was taken aside, he was breathing but very quiet, they put him straight on CPAP and my partner accompanied him to the NICU while I stayed behind.

I was able to hold him the next day but only for an hour. He was so fragile. By this point, they could tell us that Ollie had bijemeny but were unsure what was wrong with his heart. It all happened so quickly. Going from excited soon to be new parents to a premature baby with congenital heart disease (CHD). At 5 days old, Ollie was transferred to the NICU in Westmead children’s Hospital, seen by cardiology and diagnosed with Double Outlet right Ventricle, PDA, small ASD and large VSD (they are just the heart conditions).

At 2 weeks old, Ollie’s heart went into atrial flutter and medication was not an option for him so he had to be cardioverted. It only took one shock for his heart to go back to his normal rhythm.

At 1-month-old, Ollie had his first surgery. The plan was to do a sternotomy, PDA ligation and PA banding. Not everything went to plan. Ollie was only 1.8kg. The surgeon had no trouble closing the PDA but as she went to place the band around the pulmonary artery, it seized, stopping his heart and requiring cardiac massage, which happened twice.

The surgeon then was able to put Ollie on ECMO. Usually they would avoid this on babies under 2kg but the surgeon was then able to place two smaller bands, one on each branching artery and get him off ECMO and his heart pumping on its own again. Hearing her talk about all of this and then go and see him covered in wires and tubes and a thin cover sewn over his open chest was so much to cope with but seeing how strong our tiny baby was made us be even stronger than I thought possible.

We then spent the next month and a half in the NICU waiting until he was strong enough to have the open-heart surgery he desperately needed. Ollie slept most of the time, I kept myself busy collecting the heart beads and threading them onto string and making a scrapbook for Ollie with the supplies in the NICU.

At 11-weeks-old, Ollie had open-heart surgery. The plan this time is to take the bands off, patch the arteries, and close the holes in his heart.

Everything was going well until closing the large VSD. The hole was nearly the entire size of the bottom chambers and Ollie, being a baby, his heart was very small. The surgeon was able to get Ollie off ECMO after surgery but again had to leave his chest open due to swelling. The whole thing took about 11 hours. I was an emotional wreck the entire time due to the complications of the last operation, but my partner was great, staying strong for both of us.

Ollie did require pacing wires for a short time after surgery but otherwise recovered well. The next month was spent weaning Ollie off breathing support and preparing us to take our baby home for the first time. Ollie was unable to drink orally so we also learnt how to care and reinsert the NGT if it came out. So, at 115 days old, Ollie came home.

Ollie is now 20 months old and doing great. He will eventually need another OHS to replace the aortic valve but there has been no change since his OHS so for now he will continue to grow stronger. Despite all of this, he is such a happy and loving boy," - Kellie, Ollie's mum. 

You can help kids like Ollie by supporting vital discoveries at the Victor Chang Cardiac Research Institute.

Learn more about CHD