Kobus and Desire Smit are the parents of little Carlos (and brand new Gabrielle). Carlos is a CHD Heart Warrior.
This is their story
Tell us a little about your story
When we found out that I was pregnant with Carlos, my husband and I were ecstatic! We went to a state of the art hospital where I had all the pregnancy scans necessary. When the time came for Carlos to be born we were very excited and nervous as most new parents are. Little did we know that we would not be able to come home with a healthy baby after a few routine nights in hospital. The fact is that congenital heart defects (CHD) are the most common birth defect. And sadly only a third of babies that will be born with CHD will be diagnosed in utero. One-third will be diagnosed after they are born and the last third will sadly not be diagnosed. These are the international statistics on CHD. That is why it is so important to try and spread awareness on CHD (congenital heart defects).
What happend after Carlos was diagnosed?
After a long birth, Carlos was born just before midnight. Since I was exhausted, he was taken to the nursery in order for us to get some rest. We were informed during the night that he was breathing rapidly and that the nursed informed his paediatrician about it. Just routine procedure. The next morning the paediatrician, a well renowned lung specialist, informed us that they transferred Carlos to the NICU, since he was still breathing rapidly and that he had contacted one of his colleagues, a paediatric cardiologist. By lunch that day our world would never be the same again. Carlos was diagnosed with Truncus Arteriosus Type IV & Pulmonary Hypertension. The diagnosis was dire. He life expectancy, at a guess would be 3 months at the most, but none of his doctors could give us any concrete estimates of anything. Surgical intervention was the only hope. But since his type of Truncus is so rare, doctors did not seem to have much hope. Carlos was kept in the NICU on heart medication with no immediate plan. After just over two weeks we were discharged with bags full of medication.
Carlos was kept in his nursery with the room at a constant 25 degrees. We weren’t allowed to light a fireplace or take him outside. Carlos and I only left the house to drive 180km to his doctors. I felt more like a nurse than a new mom, with excel sheets for wet diapers, medication and all things baby.
After numerous catheter procedures, Carlos was scheduled to have open heart surgery a day before he would be 3 months old. The surgery lasted just under 9 hours and was hugely successful. Carlos was the only baby in surgical ICU for the first few days after his operation, since his doctors cleared it out in order for them to only focus on him and to make sure that there wasn’t any other potential germs that could hinder his recovery. He was in ICU for 3 weeks.
I think many parents first thoughts are “how will I ever survive that?”. What did you do to keep the faith? How did you keep your strength and positive attitude?
If I look back at this time I can’t begin to describe the peace that came over me. As I’m writing this I remember thinking the one day, ‘Shouldn’t we do more to find a surgeon willing to gamble with us to save our sons live?’ But we knew that what was supposed to happen would happen. My husband and I experienced inner peace that we never felt before we had our little miracle boy. We realised then, that one can often underestimate the power of faith. We experienced how one little baby could bring a whole community to its knees.
What does the future look like for Carlos?
Carlos is doing extremely well. He runs around on the farm like any 2 and a half year old would. After his operation he has had a few catheter procedures. And he will still need procedures and open heart surgeries in future, but nothing like the first operation if all goes well. At the moment we don’t take him to shops and avoid big crowds of people in order to keep him healthy and to make sure that he does not get sick. Carlos is a true testament that miracles still happen every day!
Tell us about the CHD heart foundation
Our main focus at the moment is to spread awareness about the lack of organ donors in South Africa and the rapid decline of available organs in the past decade. Our family is very proud to say that we are organ donors.
For more information about CHD go to Children’s Heart Foundation
If you want to be a hero go to Heart Kids
Heart Kids South Africa now has a dedicated bank account. For CHD specific donations please use: SOFFT FNB Cheque Account Account: 62445739454 Branch: The Grove Ref: email address
FOR SUPPORT CONTACT
National Group: Tel: 083 376 5558 and Tel: 074 120 0279
KZN Support: Tel: 072 612 5362
Cape Town Group: Tel: 084 514 9926 and Tel: 078 057 6939