Our Children

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”

~John Lennon

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.”

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Suzana Matkovic
Suzana Matkovic
SUZANA has a PhD from the School of Hard Knocks. With the guidance of a loving family, she aspired to the best job of Life: Motherhood. People that know her journey will understand how this beautiful and tragic chapter forged her resilience and tenacity to bring her passions to life by being part of the change. Upon graduation in 84, she moved into an extremely successful 30-year career. Nonetheless, she walked away from it in 2014, in order to pursue something more personally meaningful. A School of Life that enabled her to meet people of different nationalities, cultures, races, languages and outlooks, is what she sought. She is an avid advocate and volunteer motivated to help others reach their full potential by raising awareness of numerous social issues affecting many and establishing a legacy for change. Suzana’s training and experience have provided her with a unique foundation from which to produce communication that is Significant, Relevant and Actionable. Her knowledge in sales/business development and marketing started in the early 90’s where she received numerous awards for innovation, customer satisfaction and quality management. She has worked in all business categories: Local Government, Manufacturing and Distribution, Logistics and Lumber Export. Some of the more notable products and services were sold into the Environmental Energy Sector and building products that represented Structural, Civil, Electrical, Mechanical and Architectural Engineering. In addition to Marketing initiatives for various NGOs and causes near and dear to her heart. All this was accomplished by a high school graduate with determination, vision and passion. She attributes her success to many wonderful mentors throughout her personal and professional life and the inner strength God blessed her with.
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Cindy Cooper

My heart is numb with the thought of what your heart has endured. May she rest in peace knowing how much her short life means to us both. I appreciate your share, my friend. God will continue to comfort your soul. God bless you and keep you to share your heart with the mom’s of today! I love you sis. A beautiful share.

Suzana Pekrul
Suzana Pekrul

Suffering is not an obstacle to God’s purpose, but a means to achieving it ~Sinclair Ferguson~ Thank you Cynthia, like the saying goes…what doesn’t kill you makes you stronger and she definitely made me strong. I will cherish her memory forever and do whatever it takes to help others.

massimo_scalzo
massimo_scalzo

Dear Suzana, I was very moved when I read the title because I really care about the kids. I will tell you here what I felt… reading your words… Terrible… Jesus terrible… excruciating pain… it must have been an atrocious situation, Suzana. I, too, have lost a son, but he died just after the birth… I didn’t go through what you went through… I hope your human-interest story will help people gain a better understanding of the things of life, and what really matters in it.

The mere fact of being unable to help her… so tiny… so delicate… so loved is a destructive thing for a mother and a father! DESCTRUCTIVE. I can’t even imagine or understand what you and your family went through… and my sensation is … you know… when you know that something is terribly, terribly wrong… in addition to the bitter knowledge that sometimes some people suck … there’s something terribly wrong with the health system, and not only with it, but with the whole “System”, for goodness’ sake… how can that be?

Your country is one of the world′s major highly industrialized economies. As it is the country I was born in… and the same thing happens there…. But we are not numbers. There’s a story in every person…. and I see more and more carelessness… incompetence… monumental ego, and a cheap corporate ethics… they defend each other by barricading themselves behind their lies… It is time to expose the lies that mask evil with glorious rhetoric… like in the politics…

I wonder how I would react to the situation… ‘cos I don’t even understand how did you overcome such a pain. I went on to read it with a heavy heart. I kept reading, and I read all the way to the end, trembling and confused… sorry for you and your family… with a thorn in my heart, because I have children too, and I have something called Empathy.

One thing is certain Suzana: this piece goes to show people what LIFE really means… how important it is to live it, and to CHANGE for the better… because this is the great opportunity we have while living… – You made me cry, but this does not count, because through your inner pain, you sent a very powerful message that can help many become better people. Me included. That’s what matters! Inspiring… in the purest and deepest sense of the word. Thank you Suzana!

Suzana Pekrul
Suzana Pekrul

Massimo, I am sorry for your loss. Losing a child at any age is horrific because its not the natural progression of life. Its not what we expect. Sadly, it happens everyday, all over the world. Thank you for sharing your raw emotions and openness from a man’s perspective. I know from our own experience that my husband didn’t seek any form of counselling, kept everything in. Eventually it catches up to you. It needs to be discussed openly. We were told that 85% of marriages end up in a divorce when there is a special needs child, because one person can’t handle it and 1 in 5 end up in a divorce after the loss of a child. Kaitlyn was a blessing and gave me a purpose to do something positive and meaningful. And I fully agree with your sentiment regarding ego’s, cheap corporate ethics and lies. I went through it with my father. My sister spent 5 months sending emails with absolutely no change to the care the was paramount to his life. I wrote one letter and everyone jumped because I wrote “Negligence,” and sent it to all the applicable bodies. In the end, they didn’t respond or couldn’t because Neglect was proven and I let it go, it was just before Christmas. I told them that I hope they learned something from this experience. But what I see volunteering is that when one area improves slightly, another suffers. Our government sucks, our leaders suck, our healthcare system SUCKS. They make promises they don’t live up to. All I will say is that I will not quit, she gave me the strength to push for change and I will.

massimo_scalzo
massimo_scalzo

They won’t be able to shut us down Suzana… we will continue this fight, with all our strength. Thank you for your answer.

Suzana Pekrul
Suzana Pekrul

Thank you Massimo, I know you understand as do many others and I appreciate your comments. Its easy to judge, its more difficult to understand and whenever money is involved in politics, there is no understanding. The root of all the problems in this world is when money is more important than people or life. That’s why I enjoy every minute of life because I know that for some it is short. Live, Love and Laugh. Thanks again my friend!

Anonymous
Anonymous

Dear Susana, what a beautiful and heart warming testament to love. I can only express my heartfelt thoughts of this precious child who will live in the hearts of all who had contact. I know its easy to think God does not have a heart but He does, and our children are given to us as a gift, that we can lose, they are not permanent just as our life is not permanent and you will be united again. God Bless. As a grandmother who does not have the chance to interact with her precious grandchildren, knowing that they are alive and well, sometimes it feels like a death.

Suzana Pekrul
Suzana Pekrul

Thank you for your message, I can’t even begin to understand how any person could keep children from those that love them. My heart is heavy for you and I truly understand. I hope they wake up because Karma is a B**ch. I know that during my bereavement it was difficult to understand and I had many “Why” questions. In the end it was my faith that healed me, I know she’s in a better place and that we’ll meet again. She watches over me, everyday. Thanks again and God Bless

massimo_scalzo
massimo_scalzo

I forgot to say… Thank you Dennis!

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Always our pleasure, Massimo to share such poignant writing from Suzana…

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