Down syndrome, then leukaemia: A mom's brave journey with the 'love of her life' Michael

PHOTO: YOU archive
PHOTO: YOU archive

"Discovering being pregnant after 20 years should be the greatest moment ever! A priceless moment when the gynaecologist confirmed we were six weeks pregnant.

I was in good health and went for all my regular check-ups. At 13 weeks our gynaecologist suggested a routine check-up at a foetal assessment clinic in Cape Town.

During this consultation, I was told (my husband works abroad and was out of the country at the time of our appointment), "it" (this was how our baby was referred to), was Down syndrome. All the markers/indicators were there, enough to confirm he was Down syndrome.

I was extremely and surprisingly very calm.

My mom accompanied me to my appointment. No parent wants to hear their child might be born with a disability.

I opted against any testing and in fact I requested the doctor to end the consultation. This was the worst consultation I have ever experienced. Termination was never an option for us and neither was amniocentesis.

I totally understand doctors shouldn't get emotionally involved with their patients, however bedside manners are of the utmost importance especially with a diagnosis that can change a family's life forever.

Our gynaecologist was beyond supportive and to this very day touches base with us from time to time. For the remainder of my pregnancy, I walked with the uncertainty if our son (whom we named Michael when we discovered he was a boy), was going to be born with Down's.

This was a chance we as parents took and decided we will deal with the unknown as we go along. My husband, adult sons, parents and friends were our greatest support structure.

Faith carried us and although very scared and not sure what to expect, we remained positive, supported and comforted each other during this very difficult time.

Michael was born on Monday 27 August 2012 at 5.40 pm. My husband was totally over the moon. We didn't see Down syndrome. We welcomed our beautiful baby boy into this world a perfect moment for us as a family.

Our paediatrician told us our baby was born with Down syndrome and that further blood results will confirm the type of Down's. Michael was rushed to neonatal ICU while I was in recovery.

My husband was with our son until I was wheeled into my room later the evening. By then Michael was stabilised.

Thankfully our son was safely delivered, but we faced an unsure future. This is a total understatement. We continued to educate ourselves regarding Michael's condition. Our sons and Michael's grandparents stood by us and said we were all in this together. From six weeks old we started therapies.

At 10 months, I noticed one Saturday morning Michael had little red spots in his face, lower legs and ankles.

I thought he might have measles! A friend of ours who's a dermatologist checked Michael out on the Wednesday morning, arranged a biopsy of the spots on the Thursday as well as extensive blood tests.

By the Thursday evening, he popped around to our home and said, "There's no easy way of saying this, but Michael might have leukaemia."

As you can well imagine, my world collapsed. This tiny little angel of ours, struggling to reach his milestones, now had to deal with leukaemia.

Michael had to go for further blood tests on the Friday morning and our paediatrician called me at approximately 11am later that morning, advising us we had to get Michael to Red Cross Oncology ASAP.

Once again Michael had to endure more blood tests, confirming his platelet count was 11 and it should have been a minimum of 150! He had to have a platelet transfusion that very same afternoon.

I vividly remember the red spots disappearing as the platelets made their way into his body. The oncologist was kind to discharge us for the weekend, but we had to return the Monday morning for Michael to have a lumber puncture and bone marrow biopsy.

I was shattered. This little angel was totally unaware what was ahead of him. We prayed that Michael did not have leukaemia, but the results proved differently the Monday.

The oncologist confirmed Michael was positive. NOW OUR SON HAD CANCER TOO.

Our parish priest walked into the high care unit as the doctor disclosed Michael's results to me. Once again I was shattered. My husband was abroad. I managed to tell him to catch a flight home, because our baby was about to start chemotherapy.

Michael and I lived at Red Cross Hospital for six months, of which we were only home for two and a half weeks during that time. Michael had a few close calls where everyone thought he wasn't going to make it.

He was moved to ICU during the early hours on a Sunday morning in October 2013. With prayer and submission, he thankfully pulled through.

At that stage we opted to stop chemo and decided to appreciate, enjoy life and live it to the fullest. We came home and although he faces many other challenges, we are thankful for every day.

When Michael was diagnosed with Down's, our family (this includes our friends) were there, when CANCER came knocking at our door, family and friends were there too. We are humbled by the fact that we are in the position to afford Michael this opportunity, because he's doing extremely well.

Today is all we have, tomorrow is never promised. Without the support of family and friends, we are totally lost."

This story was submitted to YOU by one of our readers and has been minimally edited.

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