By Samuel Nicolas Broekman
My Mom and Dad wanted another baby and were blessed in April of 2014 to find out that another baby was on the way. To their shock, in May 2014 the Dr discovered not 1 but 2 babies in Mom’s tummy! Once the shock wore off, there was so much excitement and preparation.When we were 22 weeks into the pregnancy, Mom attended a #FoetalAnomaly Scan for any risks to be identified and also to find out if we were boys or girls. They arrived with 2 girls names picked out and 2 boys names… And were excited to learn that we were boys… Mommy was so outnumbered now, our big brother and now the 2 of us. At the scan our names were decided, baby B was at the top looking down on Baby A – one of the chosen names was Gabriel and so Baby B looking down like an angel over Baby A became Gabriel and I, Baby A was named Samuel. Little did my parents know how much that would mean when just a couple of minutes later the #Sonographer pointed out a serious problem in my right lung.
They left the scan knowing only that initial thoughts were that I have #CongenitalCysticAdenomatoidMalformation (CCAM). Mommy immediately contacted my big brother’s paediatrician who called right back and suggested that she travel to Cape Town to the Fetal Assessment centre as a twin pregnancy is always high risk and now my situation made it even more risky. The condition is so rare that there had been no cases treated in Port Elizabeth and our Dr’s wanted to ensure we were adequately cared for. Statistically #CCAM occurs only once in every 35 000 pregnancies. In twin pregnancies 1 in 1 million! I was unique from the start! CCAM is a type of congenital thoracic malformation and refers to a group of malformations of the airways.
There are many potential complications – #hydrops (heart failure) being the greatest risk! This could be treated via shunt surgery whilst still in my mommy’s womb, but would be a massive risk in a twin pregnancy. CCAM has been linked to childhood cancers, it can cause acute respiratory distress & rupture of the cysts could cause a collapsed lung. Mommy and Daddy took a trip with my older brother to Cape Town and it was confirmed by their Specialists that the CCAM was the correct diagnosis. The prognosis remained unknown, due to the unpredictable nature of the condition. As dire as it all seemed, there are also documented cases of #Asymptomatic babies, in some cases living out their entire lives with the condition, untreated! Information was scarce for my parents, but the medical team around them was excellent!
We were administered #steroids at 29 and 31 weeks to strengthen our lungs for what was expected to be an early delivery. We were monitored every 2 weeks and we decided to make our grand appearance at 34w5d. We were immediately assessed and admitted to the NICU – I was in as good a condition as my baby brother (3 minutes difference between us!) and it was only 6 days and we were allowed to go home! I was asymptomatic, despite the CCAM being visible and present on x-ray. My first 4 months, everything was completely normal! We were so blessed! The Doctors ordered a CT scan and we were told the CCAM was larger than initially thought and it was situated between 2 lobes. Our amazing Cardio-Thoracic surgeon, Dr Sewsunker, was incredibly patient and helpful when handling Mommy! He was confident that I would need a #Lobectomy, but he wanted me to weigh 10kg’s before doing the surgery. So we were sent home safely again!
My parents were told that due to our compromised immune systems, we had to limit visitors and Mommy became a germ freak… I think that my parents spent thousands of rands on hand sanitisers and made some people angry by keeping them away! Sadly, it didn’t help and at 5 months we both contracted RSV and were hospitalised for a week. Mommy and Daddy had to stay with us and thankfully our large family helped by looking after our big brother at home! Our friends and family relieved my parents so that they could take breaks – but everyone was VERY happy when we got home!
The Dr’s were very interested to see that Gabriel actually was more sick than I was, despite the CCAM on the right. We did have bronchitis a number of times during the year! As it kept happening, our Paediatrician, who Mommy trusts with all her heart, Dr Dave Purchase, contacted Dr Sewsunker and another CT was scheduled for September 3rd, and surgery for the 4th if there was no improvement in my scan.
The CCAM was bigger yet again and I was put on the operating table around 1pm on September 4th, just 2 months shy of my 1st birthday. After 4 hours of surgery I was wheeled into the NICU after an invasive surgery that was below my right shoulder blade and was very large. I had 2 tubes in my chest to drain fluid and I was on so much medication, but was still in severe pain. Dr Sewsunker informed us that everything was larger than expected, however, it was restricted to the middle lobe so I didn’t need a double lobectomy. Mommy and Daddy were relieved to hear that piece of good news.
We also heard that we were just days away from what would have been a collapsed lung and a fight for my life… God’s perfect timing!
I recovered amazingly and on day 3 my drains were removed and we went to a normal ward. On day 6 I went home with minimal pain and very excited to see my brothers. It was challenging because of the size of the cut, I was in pain when I tried to crawl so it was frustrating. It also hurt if anyone touched me in the incorrect way – but after 6 weeks I was signed off by Dr Sewsunker and have been a very happy, very healthy little boy since! We turned 3 in November and we are the light of our parent’s lives. I am 100% healthy and don’t even know how difficult my 1st year was. I achieved all of my milestones slightly ahead of my baby brother! And today I am a clever, funny, charming and boisterous little boy who loves to play! For any mommies and daddies who have babies who have been diagnosed with this disease – we are strong and we will get through it! I am proof of that!