From IVF to a Rare Health Condition: One Determined Mama’s Journey

By Sinem Ibrahim

Like so many fellow women understand, for my partner and I, becoming pregnant was not an easy feat. My husband and I tried for two long, gruelling years before I was referred to a fertility specialist for assistance. The wearying process of IVF is taxing, not only physically, but mentally, and emotionally. To describe the process as a roller coaster ride of hope and despair is truly an understatement.

We went through 6 cycles to stimulate ovulation which caused the worst mood swings and physical discomfort while retrieving the eggs proved more difficult than we had anticipated. We faced the complications of hyper-stimulation and two blood clots before a fertilised egg finally decided to stick. Finally, we were rewarded for our endurance and we are now blessed to have a precious son.

The pregnancy was going as well as could possibly be, and things were looking positive until the 20-week scan. We were beyond excited and overwhelmed with anticipation to see our little bundle of joy on the monitor…The baby that we had struggled and sacrificed so hard to have.

It wasn’t even five minutes into the scan when I noticed the sonographer’s face change. I knew in my heart and deep in the pit of my stomach that something was wrong. She scurried out nervously to seek another opinion, and devastatingly when she returned her face was just as concerned. Adrenaline flooded my body with fear and concern. I could scarcely focus on the voice that was informing me that my son had Fetal Hydrops. This is an accumulation of built up fluid within the body and usually results from a genetic disorder. This condition is often fatal, or so I was told. Following an amniocentesis test, I was advised to see my obstetrician and to seriously consider terminating the pregnancy.  

I knew in my heart and deep in the pit of my stomach that something was wrong. She scurried out nervously to seek another opinion, and devastatingly when she returned her face was just as concerned.

Long story short, I had to see a myriad of specialists, who provided me with information that was just as confusing as the previous medical expert. My son’s tests to all of the conditions that were known to cause Fetal Hydrops returned a negative result which baffled both the experts, and my husband and I. For the remainder of my pregnancy, I had to have a scan every week until at term, I was finally induced with a medical team on standby.

With much trepidation, I delivered a son on the 30th of September, 2015. Miraculously and with overwhelming relief, our precious son was born perfectly healthy, and is now a very active, mischievous and cheeky little two-year-old with a very rare red blood disorder called Stomasyctosis. He and I are a part of the very unlucky few to inherit this genetic disorder. In fact, I am told that there are only another 10 in the entire world who are diagnosed with this condition.

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