Haziq is our special little Warrior, born on 23 May 2017.
He has been in NUH since birth. Immediately after I delivered, he was quickly brought to the NICU as his oxygen levels were low. We didn't even get a chance to see him or hold him. It was only the following day that we were able to see him.
Haziq has a coarctation of the aorta, a condition that's not rare but uncommon in Singapore.
The aorta is the main artery in the human body which distributes oxygenated blood to all parts of the body. Having a coarctation means that the aorta is narrowed, and this impacts how much oxygenated blood flows to the rest of the body. In general, when a patient has an aortic coarctation, the left ventricle needs to work harder generating higher pressure than normal to force enough blood to push through the narrowing so that it can get to the other parts of the body. In Haziq's case, his left ventricle is a lot smaller than the right and has a blocked valve (hypoplastic left heart), which presents another challenge for him.
The repair of the coarctation itself does not require an open heart surgery. It is done through an incision made on the left side of the body. However, as Haziq also has a hypoplastic left heart, the surgeons have to open up his chest and do a modified Damus-Kayle-Stansel procedure. Haziq had a 50-50 chance of surviving the surgery. There was no other choice. It was either let him die without fighting or do everything and anything that we could to give him that chance to live.
Image: Haziq's surgeon drew diagrams of the procedure for us to try and visualize, cramming what he knows in his numerous years of experience into 10 minutes.
Haziq went for his combined open heart surgery on 13 June, at 9.30am. It was a 9hr operation that was successful and we are thankful to the surgeons who gave him a chance to survive.
Three days after his surgery, Haziq went into his second cardiac arrest. Doctors found a cyst in his left lung which ruptured the membrane, causing it to collapse. They were successful in resuscitating him but he needed to be put on a heart lung machine called the ECMO until his lung recovers and we know that recovery in general will be a long journey - one which all of us will take with him.
29 June: Haziq was taken off the ECMO machine after 12 days. Initially, he was only supposed to be on it for 3 days but his left lung showed no sign of progress and they didn't want to tax his right lung. An hour after being off ECMO, his heart and right lung were not able to manage the stress and started to fail. This was his third cardiac arrest. Doctors did not want to put him back on ECMO as it would do him more harm than good at this stage. We almost lost him. His carbon dioxide levels were so high, even with full ventilation support and nitric oxide. He was not his usual pinkish self; he was so blue, so cold. It was heartbreaking. The doctors told us there was nothing more that could be done, it was all up to him. But syukur alhamdulillah! This little boy, who is barely 2kg, fought with such strength and will. He made it through that night and the nights that followed. Our Warrior son braved through another battle and won!
Fight on fight strong is something I tell my precious boy every day that I see him. No baby should have to go through all this. I know there are plenty other parents who share stories similar to ours. We send our love, thoughts and prayers to them to be strong through these challenging times. Remember, Allah swt does not burden a soul more than it can bear, that He gives the hardest battles to His strongest soldiers.
I hope to raise funds through this page for Haziq. All donations and contributions go towards his bills for his open heart surgery, being warded at the NICU (Neonatal Intensive Care Unit) and PICU (Paediatric Intensive Care Unit), the ECMO machine, his daily blood products, blood tests, scans, dialysis, medication as well as his future follow-ups once he is discharged (Insya Allah, we keep on praying). Every little bit helps.
We pray for Haziq's recovery, we pray for him everyday. We can't wait for the moment when we will finally be able to hold him, hug him, cuddle him, kiss him instead of just being able to stroke his head or pat him to sleep while he lies in bed.
Fight on, fight strong son.
I am so proud of you.
We love you. So much.
To all who have been supporting us, not just by donating, but with your prayers and words of support and encouragement - Thank you, and may Allah swt ease your burdens and bless you with good health, wealth, peace and joy.
Update: I finally understand what the whole procedure was. All this while when we thought he did not have a hypoplastic left heart, he did. Initial detailed fetal scan report suggested that it was an evolving hypoplastic left heart. However, at his 30+ week scan, it showed that his left heart had grown but still not to the normal/average size. Please understand that we are not medically trained nor understand medical jargon very well.
Image: Detailed fetal scan report. Also, the report that made it impossible for us to get insurance for Haziq.
Besides GIVE, we have received SGD 400.00 from other sources.