I will never forget 14th April 2013, a day that changed my life forever. It was also the day that my learning for Congenital Heart Defects began. My little boy Jack was just ten days old when he was admitted to our local children’s hospital, Alder Hey with a respiratory rate of 136 breaths per minute. Pediatricians, midwives, and GPs had all said he was fine, but my maternal instinct told me otherwise. I just couldn’t let it go, I knew something was not right.
The following day he had an ECHO which confirmed my fear - Jack had a rare congenital heart defect (CHD) known as Double Inlet Left Ventricle with a hypoplastic right ventricle. I did not know anything about a little hearts child care. What did it take? He was so small! But the fantastic surgeons operated on his tiny body when he was just two weeks old. They fitted a FloWatch device to his pulmonary artery. At six months, the FloWatch was removed, and they performed a bilateral Cavo-Pulmonary. His oxygen saturation’s were between 80-85% for the following five years when his consultant decided he was ready for the Fontan completion.
This operation took place on 26th November at 9.30am, at 3.40pm his surgeon, the wonderful Atillio Lotto came to tell us that the operation was successful! I can’t even express the relief I felt being lifted off me when these words fell to my ears. Later that evening Jack was off the ventilator and drinking small amounts of fluid and eating breakfast cereal! He was moved to HDU the following day where he started physio; he was standing up by his bedside less than 24 hours after surgery!!!
After nine days of him showing everyone how strong and brave he is he was finally discharged. I could take my baby boy home! We spent a fair bit of time just being grateful and enjoying every single minute together. During this time I thought a lot about how little people knew about CHD and how it affects children. I was so ignorant before I had Jack, I never knew the risk of having a baby with CHD was so high. I feel that the more people know and understood the signs of CHD, there are so many lives that can be saved and families can get timely intervention.
When Jack was first born, he was pink and feeding well and weighing 8lb 9oz! But his breathing was rapid. I am grateful for my strong maternal instinct and the faith I had in this feeling, as I believe that without that, my little Jack would not be with us today.
I had recently come across a Foundation in India called Genesis Foundation that focuses on raising funds for little hearts child care in this particular area – CHD. Many children are suffering as my boy did, except they cannot even afford surgery.
-Contributed by Katy Badrock, mother of Jack, United Kingdom