"In July 2006, I found out that I was unexpectedly expecting. I was scared, nervous, but elated and hopeful that this pregnancy would mean great things for me and my family. I embraced this new life that was growing inside of me, looking forward to our future together. I imagined what the next summer would be like with a new baby here. I pictured the next mother’s day with a little one in my arms. My boys were happy and excited….life was good.
I called my midwife and arranged to begin my prenatal journey as healthy as possible. One day she was here to draw some blood for regular prenatal tests and she asked if I would like her to draw a little bit extra to send away for a ‘maternal serum test’. I had never opted for this in the past, but this time I said, “Sure, go for it, it will give me one less thing to worry about.”
Several years ago in August of 1999, I delivered a stillborn son named Noah-Alexander. I already had 2 sons, and I went on to plan 2 more pregnancies after his birth. Each pregnancy was very nerve-wracking for obvious reasons, and every day of those subsequent pregnancies was a joy, and a struggle, and resulted in 2 more healthy sons. I told myself that lightning won’t strike twice and tried to relax and enjoy this new journey.
I remember the day that my midwife phoned to let me know she had some results for me. She stopped by to explain to me that there was a 1:8 chance of my baby having Trisomy 18. I had never heard of it. She told me it’s a chromosomal abnormality and that she had made me an appointment with a genetic counselor in the city nearly 2 hrs away. I attended that appointment and was told what Trisomy 18 is, and was offered termination, and/or a chance to have an amniocentesis performed. I opted for the amnio to find out for sure what we were possibly dealing with. I could not envision myself spending the duration of the pregnancy wondering what might happen.
I went to Toronto, nearly 8 hrs south of here, to North York General Hospital to have the amnio performed. I was frightened about the risks, but everything went fine. 3 days later I received the preliminary FISH (fluorescencein situ hybridization) test results which indicated that Trisomy 13 was detected in his cell sample. The final results came back a couple of weeks later and told me that I was expecting another son, and he did indeed have Full Trisomy 13, aka Patau Syndrome, in EVERY single cell of his entire body, meaning he had 3 copies of the 13th chromosome instead of just the 2 that he should have received—one from his father, one from myself.
More information about Trisomy 13 and Bennett-Chadlen can be found here at this site: http://www.livingwithtrisomy13.org/MemoriesOfBennett.htm
I chose to embrace my son’s diagnosis and give him as much love and comfort as I could during our time together. I was told that he may be premature, stillborn before Christmas, and I was very frightened as I remembered what I went through with Noah-Alexander so many years ago. This time I was prepared and decided to preplan his funeral arrangements in the event that it should occur suddenly. I wanted to be able to give him the type of service that I hadn’t been able to give to Noah. I knew that when or if it should happen, that I would be recovering from childbirth, and grieving, possibly unable to think clearly and plan as thoroughly as I would like to. I didn’t want to have any regrets.
I travelled to Toronto once again to have level II ultrasounds, and fetal echocardiograms to see if any birth defects could be detected. The doctors had noted the possibility of a non-severe Congenital Diaphragmatic Hernia. I requested to have a Fetal MRI to see what we were dealing with. He had no organs up in his chest and his lungs developed normally, which was great news! These CDH babies do require immediate intubation at birth so that they don’t cry and possibly swallow air which could cause the internal organs and intestines to swell up and make it more difficult to fit everything back in place during the surgical repair. They were unable to see clearly if there was indeed a CDH, but we prepared for that just in case.
I made arrangements to have the remainder of my prenatal appointments in Toronto at Mount Sinai Hospital, and Bennett-Chadlen would be transferred across the road and treated at the Hospital for Sick Children in Toronto, Ontario, Canada.
Bennett-Chadlen was born on March 29th, 2007, 2 days overdue. He was very alert and responsive following birth and intubation and did not require the paralyzing sedatives because he was not fighting the ventilator. When I was able to see him for the first time, I spoke his name and he turned his head to look at me. He heard me and knew I was there! It was the most amazing feeling in the world. My friend quickly snapped a photo of him looking right at me, and another one looking at her because he saw the flash of the camera. I cherish these photos more than words can express.
The surgeon came over to Mount Sinai to see him and told us the wonderful news that he appeared to be doing very well and may not require the surgical repair. He said he was transferring him to do further tests, and would be able to extubate Bennett-Chadlen if the hernia was not detected.
The next time I saw my boy later in the day, he was unresponsive and on full life-support. He fought hard and lived his life in 8 days, passing away due to unexpected complications on Good Friday, April 6th, 2007. Easter is always a period of remembrance, as well as his birth and angel dates.
We miss him very much, and are very happy that we had the chance to hold him and sing to him as he passed away in our arms, surrounded by his siblings, family, and dear friends.
We had a chance to have a prenatal photo shoot taken by photographer Heather Renee Morgan of Lifespark.ca, and she also did a photo shoot while he was in the NICU. On his final day we had a photographer come from a wonderful organization called Now I Lay Me Down To Sleep and he took photos of all of us surrounding Nimkee with unconditional love. I highly recommend that all new mothers-to-be of babies who have been prenatally diagnosed with any type of possible complication should be sure and get these photo mementos to hold onto. I have made my photos into video montages, and display Bennett-Chadlen’s keepsakes in my home so others can know he is still very real to us.
I want to be able to reach out and give love, comfort, and support to others as they to endure the difficult NICU days. It’s difficult to prepare for such an emotionally charged period, but we will strive to do our best to provide others with things that will help make the NICU experience a little more positive, comfortable and memorable.
We will also make available some Bennett Blankets and Bennett Bunnies to give as sibling gifts. My boys have these and they sleep with them every night, drifting off to sleep cuddled in their baby brother’s “hugs”."
Much love, peace, and Nimkee blessings to you and yours……Melissa & family
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