"When they fixed his heart they must have super charged it" - Matthew's CHD Story

On the 23rd of November 2020, after nine long months, made even longer by Covid lockdowns and isolation, our little miracle boy Matthew was born, weighing in at 3.79kgs. He seemed to be a happy, healthy little boy and we were very happy to be discharged from hospital after 3 days with a perfect little bundle of joy. His big brother was so excited to meet him.

After a couple of blissful, new-born days we noticed that little Matthew’s breathing seemed a little erratic and his skin seemed to mottle so we decided to go to our paediatrician for a quick check-up, assuming that it would be a quick in and out appointment and that we were being unnecessarily cautious. We managed to get an appointment at 12pm on the 15th of December (Matthew was only 22 days old). She did a full check-up and delivered the unexpected news that she had picked up a heart murmur and that she needed to call a Cardiologist for a referral. Still unaware of how serious it was, she stepped out of the room to make the call whilst we waited anticipating an appointment the next day and discussed all the Covid hoops we would have to go through again at another hospital. We never for once thought we would be rushing little Matthew to Netcare Sunninghill Hospital that afternoon to see [paediatric cardiologist] Dr Jeff Harrisberg for a scan. Before we knew it, Covid was the last thing on our minds and we were making frantic plans to leave our two year old eldest son with family having been told that we had an immediate appointment with Dr Harrisberg at Sunninghill hospital.

When we arrived at Sunninghill, they immediately took Matthew in for a scan which seemed to go on forever whilst they looked for the heart murmur that the paed had heard just an hour ago. Dr Harrisburg sat us down after the scan and told us the terrible news that Matthew needed to be admitted straight away for emergency surgery as he had a narrowing of the aorta. We can still hear his words as he said that if we hadn’t brought Matthew in that very day, he would have crashed at home. At this point we were in a state of shock, our idyllic little family had suddenly been thrown into a state of turmoil and we needed to try and navigate the hospital admin, more covid tests, rush home to pack bags, make plans for our eldest son and worst of all decide which parent would be the one allowed in to see Matthew. Being in the middle of the 2nd Covid wave, the hospital restrictions were very tight.

Later that evening (still in a state of shock), we met our incredible Cardiothoracic Surgeon Dr Hendrick Mamorare at 8pm for him to explain what surgery he was going to do on Matthew’s heart. He explained more about Coarctation of the Aorta which is what Matthew had, and that he will be doing the surgery at 7am the next morning. I tried to write it all down as by this stage we were remembering very little of the detail, our only concern being our little boy but I'm pretty sure I still only took half of the detail in. We had to leave our little boy on his own in the hospital that night and after we said our tearful goodbyes we moved into a bnb down the road where we would stay for the remainder of that week. That night, as would be many to come, seemed to go on forever but at 7am on the 16th we were back at the hospital and little Matthew was taken into theatre. Our family joined us and we paced around the car park as we were not allowed inside. The anaesthetist working on Matthew was wonderful and kept us updated throughout the operation. Finally, we got the call to come inside and see him, nothing could have prepared us for the sight of all those wires attached to him and the ventilator controlling his breathing.

Dr Mamorare explained to us how the surgery went (once again I took out my notebook), and we found out that Matthew's heart was wired a little differently. Not only did he have a Coarctation of the Aorta but he also had a bicuspid valve and a left subclavian vein that made the surgery slightly different. Instead of being able to cut and join they had to do a patch as the vein was on the wrong side and where they needed to cut. Despite all of this and the increased complexity of his condition, Matthew was a little fighter and came off the vent the next day. The nurses in the ward were amazing and made it easier for us to leave him (only one parent was allowed to visit for an hour a day due to Covid).

After a few days in CTICU we noticed that Matthews voice was still very hoarse and we were told that he had developed stridor which may be an indication of a glottic web that could require additional surgery. It was now a few days after a very subdued Christmas, and still in the middle of the 2nd peak which meant there weren’t any paediatric ENT’s available at Sunninghill to treat Matthew so we had to try an arrange an ambulance to take him to Sandton Clinic where there was an ENT that could see him. We were transferred on the 4th of January 2021 after 20 days in the CTICU to Sandton Medi Clinic where we were told that he had been scheduled for his new operation on the Wednesday the 6th.

On Wednesday Matthew went into theatre after we had been prepped about what to expect (cue my now almost filled notebook) including that Matthew would be on a ventilator for a week while his vocal cords healed as a glottic web is when the vocal cords are joined together. We steeled ourselves for the sight of him on those machines again. Once again, we paced the parking lot until I got a call from one of the nurses saying he is all done and that they found nothing wrong with him and he didn’t need the operation. This came as a huge shock as we had prepared ourselves for another long surgery, but once we meet with the doctor she explained that the one side of his vocal cord was paralyzed but she wasn’t sure if it was temporary or permanent. The reason for this was also unknown as there could have been many things that could have made this happen. Unbelievably, we were discharged from the hospital the next day.

Unfortunately this was not the end of the story as Matthew had another setback that week and on the Saturday we had to rush back to hospital, this time back to Park Lane as it was the closest hospital. He had developed a Bronchopneumonia and was admitted in to hospital but had to be moved from Park Lane to Sandton as there were no beds in the NICU for him. By this time we were experts on finding ambulances, sorting out hospital admissions and navigating Covid protocols. Dr Harrisberg was called in to see him and double check his heart and do another scan just to make sure everything was fine. To our relief his heart was fine but he had to spend another two weeks in hospital. The 5 weeks in total that he was in hospital seemed like an eternity and we felt like we were trapped in a never ending nightmare.

Thankfully, after we left hospital for the second time Matthew just thrived and kept on amazing us. His vocal cords are now working perfectly as he demonstrates through his loud chatter and giggles, there is rarely a quiet moment in our house. All of his Doctor check-ups and visits have gone so well. He is exceeding all his milestones and really keeps us on our toes. To see him today you would never guess at the traumatic start he had to life. We have even joked with Dr Harrisburg that when they fixed his heart they must have super charged it.

We are forever grateful for everything that was done for our little Matthew and we cannot thank all the Doctors and nurses enough for everything that was done. If I could give one word of advice to any parents who go through this is support, make sure you rally your support around you and trust the process and doctors. Everyone is there for you to lean on.