Dinesh's story

Anusha first made contact with HeartKids through the helpline in early 2019 when her in utero baby was diagnosed with Hypoplastic left heart syndrome during a routine 20-week ultrasound. Anusha and Fiacre had also just become parents to their first daughter, Amali, who was one year old at the time.

Dinesh was born on 30th April and immediately transferred to the Neonatal ICU at the Children's Hospital at Westmead. Dinesh had his first open heart surgery when he was only two days old.

A few days later, aged two weeks, Dinesh had his second open chest surgery and a third when he was three months old. At around 15 weeks of age, Dinesh also had a breathing tube and camera inserted to check his respiratory system after there was difficulty in removing his breathing tube.

“It has been a stressful time for all of us including our extended family who have supported us. Dinesh spent around two months in an ICU where an adult couldn’t stay by the bedside. It is a difficult experience to leave your newborn baby alone in hospital by themselves even though you know that they will be getting the best care. Dinesh also had a readmission to ICU due to low cardiac output syndrome and we thought we were going to lose him several times.”

“Dinesh also spent another two months in the ward where it was essential that a parent or carer stayed by the bedside. Having our family split between the hospital and home means that we have not been able to spend as much time with Amali who is still quite young or with each other given that usually one of us was at hospital and the other was with Amali (or in Fiacre’s case at work).”

Dinesh had a tough start to his life but he is a fighter and finally after four months in hospital, he was discharged in September 2019. He is a happy, chatty little baby who likes to play on his mat and sit up and look around at what’s happening. He’s very sociable and likes to chat to everyone.

“Now Dinesh is home, he still has higher care needs that your average newborn as he is still being fed by a nasogastric tube six times a day. These days we are not going too far from home or trying to do too much. We were hoping to take him overseas to see our family but he does not have medical clearance and may have to undertake a flight simulator.”

It has been an emotional roller coaster for the whole family and HeartKids have been their compass throughout their journey. They provided the family with support even before Dinesh was born through family support officers and an official support page which linked the family to their ‘Parents as Mentors’ program. Through this the family have connected with other heart families, including a peer mentor whose child has the same condition as Dinesh. They also appreciated the HeartKids morning teas and the heart beads rewarded to Dinesh as he endured each procedure and treatment.

Dinesh will require another surgery at about 4 years old called the Fontan and HeartKids will be there to support the family to guide them through their journey.

How UnLtd helps kids like Dinesh:

UnLtd supports HeartKids by funding programs such as the Teen Camp for teenagers with congenital heart disease. UnLtd has also created partnerships between Initiative who for several years have been instrumental in driving the annual HeartKids fundraising campaign “Show Your Heart”; and DDB who are currently working on a brand strategy for HeartKids.

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