"The heart will make you stronger" - the Zackey family's journey with CHD

Sienna Zackey was born on the 22nd of May 2019, after a long and complicated pregnancy. She weighed in at 2.4kg at birth, Bodene and Grant Zackey’s second baby girl.

A few hours after her arrival, Sienna’s pediatrician had grown concerned about her colour - “they kept putting her back in the incubator and told us to dress her warm,” recalls Bodene. “When I held and fed her, I told Grant that she was breathing too fast. He said to me that I was being paranoid because our first born was prem, and spent a lot of her first year of life in hospital due to her lungs. My Mom said the same thing, that I shouldn’t stress.”

The Zackey family were asked to take Sienna for a weigh in every two weeks, due to her tiny size. It was at her first weigh in that a Sister on duty noticed that “something is not right”. She notified Sienna’s pediatrician, who admit the Zackey’s little girl immediately and put her on oxygen. After three days of treatment with no improvement, paediatric cardiologist, Dr Greenwood Sinyangwe was called for a consult.

Sienna was diagnosed with a Transitional AVSD, a Cleft mitral valve and severe mitral valve regurgitation.

“For Grant and myself it seemed unreal. We were emotionally drained and had no idea what to expect. Naturally when anyone hears anything about the heart, you immediately panic. However, Dr Sinyangwe reassured us that it can be repaired and other children are not as fortunate. I still thought to myself, no man is this reality? This can't be happening to my child...these things are unheard of. Well, I was completely shocked and after a few days of research, I was horrified to find out that CHDs were so common.”

Reality started slowly setting in for the Zackeys. “There was a whole world out there that we never knew about or thought could be true.” During the time period between diagnosis and surgery date, Sienna was put onto two medications to help alleviate some pressure and to help her gain weight for her surgery.

At 8 weeks old, Sienna went into heart failure. “She was in hospital most of the time,” shares Bodene, “more often in hospital than at home. Grant joked that we needed a VIP parking at the hospital.”

Sienna was still too small to undergo her heart operation. “Dr Sinyangwe wanted to try his best to get her to 1 before her repair was considered, but unfortunately at 3 months old, at a regular check-up, Dr Sinyangwe confirmed that it was time for surgery.” The Zackey family had two weeks to prepare. “It was a scary and stressful time in our household. My Mom kept telling us to pray - miracles do happen. Our family prayed, our friends prayed and people we didn’t know prayed for us. Parents we met in the paediatrics ward even prayed for us. It was remarkable.”

Dr Hendrick Mamorare repaired Sienna’s heart on 11 September 2019. “It was the hardest thing we have ever done. Taking our precious little Sienna to the operating room was dreadful… although everyone from the staff to the Doctors were extremely supportive, it still felt like it was the end of the world. As I left the theatre, I heard the theatre sisters singing whilst Sienna received anaesthesia.

This warmed my heart.”

“After a long 4,5 hours we received a message saying that the surgery is going well and that she would be in recovery in 1 hours time. We waited patiently outside the CTICU.”

“Sienna looked very scary but she was alive and stable, and that is all that mattered at that point. Grant and myself hugged Dr Mamorare so tightly and couldn't stop thanking him. It was that night, after meeting other CHD parents and hearing their stories, that I realised we had received our miracle that we all prayed so hard for. Maybe not in the way we thought... God had sent us his angels, the Netcare Sunninghill Hospital staff and Dr's to care for our baby. She had the opportunity to be repaired and to live a normal healthy life. We couldn't have been more thankful.”

We have never seen more 'strong and determined' parents and kids as what we saw inside and outside of the CTICU… their strength gave us inspiration. We were not as alone as we initially thought.”

Ten days after her open heart surgery, Sienna was discharged and the Zackey family were all back home, safe, healthy and together. “What a relief it was for us all to be united as a family. Her big sister missed her so much.”

Sienna will need another operation when she is about five years old to repair her cleft mitral valve, which was unrepairable at the time of her op. “However she is doing so well, you wouldn't even think that there was a heart defect by looking at her. Sienna is our warrior and we are extremely blessed.”

“A big thank you to all at Netcare Sunninghill Hospital for all the support and assistance. It's means more than you will ever know. I still don't know how you do it everyday, but please just carry on no matter how demotivating some days may be.”

“You can't change the heart... But the heart will make you stronger. Don't think it can't be done until you have tried absolutely everything. Giving up is not an option. No question is a 'stupid' question! Always ask as much as you want and need as the support system is fantastic. Talk to other CHD parents, their stories will always make you feel better.”

Sienna in CTICU

Heart Warrior's Medal

Heart warrior, Sienna and her dad

The Zackey girls