Alex was born via emergency C-Section on 7 December 2020. His due date was 25 December. Mandy went into labor and rushed to hospital. Alexander was born at 17:48. If Mandy waited 1 more hour, he wouldn’t be here. She had no amniotic fluid and he came out bone dry. At 2 weeks premature, he only weighed 1.9kgs. His saturation levels wouldn’t stabilize and he was taken to NNIC that evening and put onto oxygen.
Mandy was discharged after 3 days, but had to leave Alexander in NNICU. Still on oxygen and saturation levels still not stable. After a month in NNICU, a peadiatric cardiologist was called in to come and assess Alex. He discovered that Alex had 3 muscular VSD’s (holes in his heart). On 17 February 2021, Alex was transferred from Olivedale to Sunninghill Hospital where they operated, they did a PAB (Pulmanory Artuary Band), a band that goes around the valve from the heart to the lungs, to slow down the blood flow and regulate the pressure in the lungs. On 19 February, they reopened Alex’s chest because they wanted to double check that the band was tight enough. While in CTICU, his hemaglobin levels dropped and he had to have a blood transfusion.
After a week at Sunninghill, Alex was transferred back to Olivedale. During this time, he developed sever reflux and couldn’t keep any milk down. He also developed an oral aversion and wouldn’t take a bottle. He was fed via a nasal gastro tube. On 16 March, Alex underwent a 7 hour operation where they did a Nissen Fundoplication (where they wrap the stomach around the eosophagus) as well as have a G-tube (Mic-Key) fitted. This is a small hole in the tummy that takes the feeds directly to the stomach. The Nissen prevents reflux and vomiting
Alexander was finally discharged from NNICU on 2 April 2021. From Birth to 4 months old, he was in NNICU. All this time, Mandy was only able to visit Alex for 1 hour a day, and his dad only for 1 hour on a weekend.
The Stoma (hole in his tummy for the feeding tube) had many issues, due to the hole been made too big. The food was leaking out with all feeds, Alex was admitted to Olivedale again on 7 April 2021 to try to resolve the issue of the leaking. He was in hospital for 2 days with the issue unresolved. A thicker tube was inserted. To date, at almost 18 months old, the issues with the tube remain and all we can do is try to keep treating the leaks and infections.
Feeding times were a nightmare with Alexander crying and sweating profusely. The cardiologist was worried that Alex was going into heart failure and he was admitted to Sunninghill again on 6 June 2021 for an Angiogram and x-rays. The cardiologist was happy with the heart and couldn’t understand the symptoms of heart failure.
On 13 August 2021, Alexander was admitted to hospital to do a scope to try to find out why feeding was such an issue. It was found that he has a very small tummy and that the balloon on the feeding tube was inflated too much and the milk was struggling to pass to the tummy causing pain. The balloon was deflated a bit and Alex was doing very well.
At a follow up appointment with the dietitian, because Alex was not gaining weight adequately and at 10 months old only weighing 4.3 kgs, it was decided to admit Alex to Sunninghill again to do assessments and a bunch of blood tests to try to establish why he’s not gaining weight.
Alex and Mandy, admitted on 12 October were in hospital for 2 weeks and discharged on 26 October. While in hospital, Alex caught an infection and dropped to 3.9 kgs. After loads of blood tests and assessments done, being discharged with no answers, as all the bloodwork came back normal. Genetic testing was done, however, the results came back with nothing conclusive. The only thing Mandy can do right now is manage his nutrition as best as possible. Alex has to be fed every 3 hours and 1 feed must take a hour, with a special machine to administer the feeds. The tubes for this machine are R115 each, and a new tube has to be used daily. The special formula he is on (Infatrini) for babies that are cardiac patients and that are failing to thrive are R210 for 400 grams, 13 tins are needed a month. With all the doctors and hospital visits and bills adding up, the family find themselves in a difficult financial situation. Ongoing doctor visits and follow up appointments are essential for Alex.
Through everything little Alex has been through, he is such a happy little boy and has been a real inspiration to many people.
https://www.backabuddy.co.za/champion/project/baby-alexander – DONATE TOWARDS HIS BACK A BUDDY FUND HERE