'Damian's Achy Breaky Heart'

On the 15th of July, 2016, Damian Beukes arrived earthside and was grey/blue colour. At the time, the Beukes family thought it was due to the fact that he was born with the umbilical chord wrapped around his neck. One day later, during the paediatrician’s check up rounds, he discovered a small murmur confirming a hole in Damian’s newborn heart.

The doctor on duty advised that holes in the heart are a common occurrence in some newborn babies and that the hole would most likely close on its own at around six months of age. This unfortunately was not the case for little Damian.

“The paediatrician gave a letter of referral to go and see paediatric cardiologist, Dr Greenwood Sinyangwe, at Netcare Sunninghill hospital. We tried making arrangements to go and see the doctor, but at the time our medical aid did not want to cover anything relating to Damian’s condition as they classified it as a pre-existing condition,” shares Charlene, “we were absolutely blown away because how could it be pre-existing if he was born this way?”

The Beukes family took their little boy to a government hospital which is where they learnt that Damian’s hole in his heart was about one centimeter in size, as well as that the valve between his heart and lungs was blocked. “He told us that Damian would require open-heart surgery to make him better, and suggested that we try and take him for the operation at a private hospital as the waiting list at the government hospital was longer than a year,” says Charlene, who was told that it was in her son’s best interest to have the op before he turned one, due to the possibility of his condition worsening overtime if left untreated.

“Because of the medical aid not willing to cover any of the consultations and / or procedures, we started a NPO and group on Facebook called ‘Damian’s Achy Breaky Heart’ in order for us to raise funds to take Damian for his consultations and procedures.” The young family was told that their baby’s op could cost anything from R 500 000 to one million rand. “We were in no position to have those kinds of funds just readily available. Luckily we had such a great community on the Facebook group that offered us so much love and support!”

Damian was just a few months old when he was admitted to hospital for the first time. Charlene recalls how he turned completely blue in his face and legs, especially when he cried, due to the severe lack of oxygen in his system.

“The doctors said that for a CHD Patient the oxygen levels should be anything from 85 percent and upwards – at one stage Damian’s levels was a mere 32 percent. He also almost never had any body temperature and was always cold to the touch. We were extremely worried. We had a new-born baby with all these heart complications that we just couldn’t understand and we had a five year old son who also required our love and attention. We depended completely on our Faith in God during this horrid period we went through. As parents who has never really heard about these heart conditions and complications, we were dumbfound. We had no idea how we were going to get through this or even what to expect.”

A couple of months after creating the ‘Damian’s Achy Breaky Heart’, the Beukes family had managed to raise enough funds to book a consultation with Dr Sinyangwe. “After the EKG and Sonogram had been completed, we were informed that the hole was just over one centimeter and that the valve blockage was quite severe. Dr Sinyangwe gave us medication to help dilute the blood a little, so that more oxygen could flow through Damian’s veins.” Dr Sinyangwe had also advised that Damian would undergo his surgery between eight and tens months. “After this visit to the doctor, we were admitted to hospital on numerous occasions due to Damian’s low oxygen levels,” recalls Charlene.

“When we went to see Dr Sinyangwe just before the end of 2016 – he said that Damian is not getting any better so we had to move his operation to the end of January of 2017. This is when the real worry and anxiety started to kick in. We were devastated as we had no idea what to expect.”

Damian was booked in for his open heart surgery on the 30th of January 2017. His family spent the night with him in the pediatric ward, and recall how difficult it was to hear him crying for his milk but being unable to give him any. At 11h30, the Beukes wheeled Damian into theatre - “this was super difficult for us - we did not know if this would be the last time we held our son and told him that we loved him. A lot of thoughts rushed through our minds. We were filled with many ‘WHAT IF’ questions.”

Their son’s surgery lasted a grueling six hours. “This was the longest day in the history of days for us,” shares Charlene, “even though normal days are 24 hours in length, this day felt like it just went on into eternity.” The family had no updates from the surgical team, so as they came out of theatre wheeling Damian into CTICU, there was a slight sense of relief. “We were only able to see him for a few minutes, and were told that his op had been difficult - that it was touch and go a couple of times, but that everything went well and that they were happy with the outcome.”

Damian’s family noticed an immediate difference in the colour of his skin, and his oxygen levels had risen up to 99 percent. “The next few days were the most difficult… we were only allowed to see our baby during ICU visiting hours, and the mere fact that we could not hold our baby killed us inside. Without the Grace of God, I don’t think we would have been able to make it through this difficult time. It was so hard seeing our baby just lying there hooked up to all these tubes and wires. He was swollen to about twice his normal size too. Sometimes when he heard our voices, he would start getting restless and this would spike his fever.”

After eight days, Damian was moved to paediatrics. “Looking back, it seems like such a short period of time, but at the time the days were endless. After two nights in the pads ward, we were discharged from hospital.” Before long, Damian was more or less back to his old routine, and the family continued going for check-ups every six months, post op.

“In September of 2019 Damian underwent an Angiogram to further widen the arteries in the valve as this still has blockage. This time he only spent one night in the hospital and he recovered very well after this minor procedure.

Today, Damian is a happy and very active 4 year old little boy. He enjoys riding his bike, jumping on his trampoline and swimming. If you didn’t know about Damian and his “Broken Heart” you would never be able to tell what he has gone through in his short time on earth.

With the Grace of God, we were able to face so many giants in a very small amount of time and we will be forever thankful.

If we could give a word of advice to someone having to go through a similar situation it would be to take it one day at a time, not to overthink what’s happening and to always put your Faith and Trust in the Lord.”

Charlene and little Damian

Damian and his Dad

Damian in CTICU