My precious miracle was born March 28, 2002, and this is our personal story. The full context of her life and what we learned will be in the book I am writing. I hope the book provides some courage and hope to those who receive a Microcephaly diagnosis to live each day to the fullest, with Joy for the present moment.
Like any parent expecting their first child, there is excitement, dreams, and hopes about the future. The birth of a child is precious, a miracle and a blessing. Little did we know at the time the blessing our daughter would be.
With all the news about this rare birth defect linked to the Zika epidemic, I wanted to shed some light on our story and Microcephaly. Zika infection is known to create Microcephaly which is a rare nervous system disorder that causes a baby’s head to be small and not fully developed. The child’s brain stops growing as it should.
I had a very healthy pregnancy. Like most women who CRAVE, my cravings were salads. I had undergone an “Amniocentesis” because of my age. An Amniocentesis is a procedure where your doctor takes a small sample of amniotic fluid from around your baby. This fluid contains some of your baby’s cells (DNA), which are then examined in a laboratory to check for any chromosomal abnormalities. i.e. Down Syndrome or Spinal Bifida. My husband and I wanted to know the sex of our child and we learned we were expecting a baby girl.
During my 30th week ultrasound, it was detected that her head was smaller than her body. Like first time parents, we weren’t concerned when my OBGYN indicated that it could have been the way the radiologist read the report, and I was sent for no further testing.
What we did know is that she presented herself in a “Breach” presentation, meaning she would be born bottom first instead of head first.
At 36 weeks, my water broke and our precious miracle was born at 4lbs 5oz. The overwhelming love I felt for her hit me at my core – she was tiny, she was mine and she was beautiful.
Kaitlyn was the first grandchild for my husband’s parents and I will never forget my father in laws words “I never thought I’d live to see the day that I would be a grandfather,” he was 80 at the time. Our families were as proud and happy as we were and like every mother, I glowed.
“It matters not who you love, where you love, why you love, when you love, or how you love. It matters only that you love”
During my hospital stay and after numerous blood tests were taken, my family physician came to talk to us. We were told that because Kaitlyn was born early, there may be some developmental delays. We weren’t concerned because we knew that there wasn’t anything we weren’t willing to do, to give our child every opportunity to be the best person she could be. We were told NOTHING ELSE and we took her home.
Within a few days, the Community Health Nurse came to visit. It is typical once or twice, but ours just kept coming back which we felt was strange after talking to our siblings and friends.
We thought she was Colicky because she used to scream through her feeds. She wouldn’t breastfeed, so I pumped while she slept. She started vomiting and we took her to her pediatrician, he told us “she’s gaining weight, maybe we are overfeeding her,” then it happened, again and again, we took her to her pediatrician, same response.
Shortly thereafter she vomited after ½ oz. and I knew something wasn’t right. Her pediatrician told us to take her to BC Children’s Hospital and that he would call down beforehand.
We got down to admitting and I saw a note at the reception desk that said “Check for Microcephaly” not knowing at that time what it meant. We were in Emergency for hours and she was admitted. They poked and prodded and there were numerous doctors and specialists. Up on the ward, a doctor from medical genetics came and said to us “I am very concerned about your daughter.” It was late, my husband went home and I stayed. I went to the library while Kaitlyn was asleep to read up on Microcephaly. I have a very good memory and many people would comment how my mind was like a sponge, I absorbed everything. After reading up on Microcephaly I was hysterical. I called my husband and family and I remember this one nurse who couldn’t console me, she herself was crying.
The following day the doctor came and told us “she could live for a day, a week, or a month, but she wouldn’t live past 6 months. We were told she wouldn’t walk, talk, see or hear. We were devastated and called our minister so she could be baptized in the event something happened.
We were told at BC Children’s Hospital that it wasn’t anything genetic or chromosomal but they felt that something like the umbilical cord had a pinch or a kink in it, which decreased the blood and oxygen supply to her brain, and started to shrivel up, what was already normally formed. They were astounded that we were told nothing during my pregnancy or after her birth. Her neurologist even went on to say that the episodes where she screamed through her feeds were most likely due to the hundreds of seizures she endured on a continuous basis, un-medicated.
Kaitlyn had a G-Tube surgically inserted into her stomach so she could be bolus fed, meaning every few hours. She suffered from seizures and had GERD – Gastroesophageal reflux disease. Her vision was called cortical. The best way for me to describe it is that things presented as a solid color on a solid color were easier for her than busy things. She never walked or talked and had a mild hearing impairment. She had 2 hip surgeries and high muscle tone. Every diagnosis of Microcephaly is unique to the child and severity.
In the 6 years of her life, she taught me and those around her what it meant to live each day to the fullest. I sometimes still struggle with understanding what the outcome may have been, had we been given a choice to decide earlier. It typically occurs around the anniversary date of her death. After she died, I asked my doctor why we were never given the opportunity to decide at 30 weeks to have her delivered early. His response was “It wouldn’t have been our choice.”