Marcia
Mom to Peyton Elizabeth Armstrong
Born Still January 7th, 2011
New Philadelphia, Ohio
Our story begins in July 2010 when my husband Kyle and I found out that we were expecting our third child. It came as a shock for us. Our two older daughters were 7 and 5 years old, and we had just finished cleaning out our basement of baby items and clothes two months prior, figuring the baby days were behind us. Kyle had just turned 39 and I 38, and we had not anticipated in having any more children, but then a little surprise came into our lives. Our two daughters, Lauren & Kaitlyn were very excited to be big sisters, and we learned that our little bundle of joy was due to arrive March 28, 2011.
I was somewhat nervous and concerned from the beginning about the baby’s health given my age. However, I pushed my fears aside, especially as we ended the first trimester and everything was fine. I did have some bleeding when I was between nine and ten weeks along, but the bleeding subsided, my cervix was closed, and baby’s heart was beating away. The second trimester came along though, and everything started to change after an 18 week ultrasound. A “lemon” sign was present on our baby’s head (a marker for spina bifida), and she was 1 ½ weeks behind in growth.
We were referred for another ultrasound the following week at Maternal Fetal Medicine at a hospital thirty minutes away. When the second ultrasound was completed, no lemon sign was present, but our baby was 1 ½-2 weeks behind in growth, so we had to come back every three weeks for her growth to be monitored.
In November, at 22 weeks along, we reported for an ultrasound. This time, it was noted that our baby girl, who we named Peyton Elizabeth, was 2 weeks behind in growth, and that she was now displaying an echogenic bowel and an enlarged kidney. While we were concerned with the news we were getting, we still opted to not pursue an amniocentesis yet. We felt that the doctors were being overly cautious. I did consent for blood tests to determine if I was a carrier of Cystic Fibrosis or if I had any viruses in my body. The results did come back that I was a carrier of Cystic Fibrosis, but we kept a positive mindset. We still believed that Peyton was going to be fine plus nothing was confirmed yet.
Our next ultrasound was on December 13, 2010 at the start of my 25th week. That day we learned something serious was going on with Peyton. During the ultrasound, the doctor found a heart defect (VSD) in her, and Peyton was now 5 weeks behind in growth. She had hardly grown since her last appointment. We became highly concerned at this point and opted to have the amnio that day. Cystic Fibrosis was no longer the suspicion, but Down’s Syndrome or another chromosomal disorder.
We were scheduled to come back in 3 weeks for another appointment. We were very worried when we left the hospital that day for our daughter’s health. The news came on the afternoon of December 15th when the genetic counselor called us. She told us that Peyton had Trisomy 18. I had never heard of this disorder before. The genetic counselor went on to say over the phone that babies do not survive, and that our baby would die either before she was born or shortly after. I cried, but then went into complete shock and disbelief. I couldn’t believe this was happening, that I had just heard those words. It felt like an out of body experience, like it was happening to someone else, not us.
It was at this time I started sharing the news with our friends, family, and my coworkers through word of mouth and even Facebook. I felt the need to get Peyton’s story out, and we needed all the prayers we could get for our little Peyton. I began to research about Trisomy 18, and had read that a small percentage of babies do survive to birth, and live sometimes a few hours, weeks, and years. I prayed that our baby Peyton had the strength to beat the odds. I just wanted her to stay as long as possible, but I didn’t want her to suffer and hurt either.
Because Christmas was upon us, I decided that we need to make the most of the holiday season, and celebrate it with joy and happiness. I pushed any sorrow and distress aside, even though I felt her kicks and movements starting to become weaker. I knew it would likely be Peyton’s only Christmas holiday with us here on earth, and I wanted her to be surrounded by peace, tranquility, and joy in her remaining days here.
January 4, 2011 was another day for an ultrasound. I was now 28 weeks along. I was anxious to see how she was doing, to hear her heartbeat. However, we got the horrible news that day. Peyton no longer had a heartbeat. Our little girl was gone. It was devastating. I thought she was still moving inside of me. I couldn’t believe her death happened so quickly after we received the news of her diagnosis. I didn’t want her to be gone yet. The doctor at Maternal Fetal Medicine sent us to the lab while in tears to have my blood drawn and then sent us home to wait for an appointment in the afternoon with my regular OB so that we could make arrangements for delivery at our local hospital.
I wasn’t able to report to the hospital until two days later, January 6, 2011, as the rooms in the maternity wing were full. My labor lasted over 35 hours. Peyton was born still on Friday January 7, 2011 shortly after 5 p.m. Peyton’s body was in pretty poor and fragile condition due to the effects of decomposition on her little body. I had wanted our family and girls come hold Peyton, but in the end, Kyle and I thought it was best for them not to see her in such a state. It was upsetting to see her that way, but it was important for us as her parents to hold her and say our goodbyes.
We did take some photos of us holding her, and the hospital took footprints as well. Her little feet were in perfect condition. It would be weeks later that I would regret not taking photos of her precious little feet. Our priest came and blessed Peyton. The hospital then dismissed us at around 9 p.m. that very evening, and we left with a memory box instead of our little girl. Our hearts were broken. We held Peyton’s visitation three days later so that we could thank our family and friends for their prayers and support as well as have a chance to talk about Peyton. Her funeral followed the next day on January 11, 2011 where we had a graveside service. In planning out Peyton’s funeral, we bought her special gifts from each of us. I also came across this poem that I included in her obituary and displayed during visitation hours. It is called “Little Snowdrop”. It seemed to fit perfectly and I discovered that the Snowdrop flower is one of the birth flowers for January and it symbolizes hope and consolation.
Little Snowdrop
The world may never notice
If a Snowdrop doesn’t bloom,
Or even pause to wonder
If the petals fall too soon.
If a Snowdrop doesn’t bloom,
Or even pause to wonder
If the petals fall too soon.
But every life that ever forms,
Or ever comes to be,
Touches the world in some small way
For all eternity.
Or ever comes to be,
Touches the world in some small way
For all eternity.
The little one we longed for
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
And though our arms are empty,
Our hearts know what to do.
For every beating of our hearts
Says that we love you.
Our hearts know what to do.
For every beating of our hearts
Says that we love you.
Author Unknown
In the first month or two after Peyton’s death, we were in so much shock and we felt completely numb. We kept hoping that we would wake up one day and find that it was all a nightmare. But that day never came, and slowly we left the shock and numbness stage, and began to feel the intense sadness and pain. We began and continue to find ways to express and cope with our grief. Grief over the loss of our beloved baby girl is not an easy journey, but through all of it, from Peyton’s diagnosis, her short life, and her death, we felt Peyton had an important message and legacy. We saw how she affected people from our friends & family to strangers we had never met, once they heard her story. Through her life and death, she reminded us all of the importance of love, faith, hope, and compassion. We hope to continue to spread this legacy of hers. She truly is a special and most precious baby. She is loved and missed greatly. For us right now, we are working on accepting the reality that Peyton is no longer with us on this earth, learning to live with our “new normal”, and coping with the loss of one of our daughters. We pray for comfort and strength each and every day.
You can read more about Peyton’s story at
https://sites.google.com/site/
and http://www.trisomy18.org/site/
Marcia can be contacted at marciakyle@yahoo.com
I to was expecting my 3rd baby and around the time you found out youi was expecting yours I had my first ultrasound July 19th 2010 and was told she was behind in growth of her limbs. I had two more ultrasounds and a meeting with a genetic counselor a few weeks later to be told they suspected Thantophoric Displaysia type 1 a letha form of dwarfism. I held out hope and was able to carry her until the day before I turned 35 weeks but I went into labor because I also had polyhydraminos to much fluid.
Due to her not being ready the doctor did an emergency c-section which I was told my amniotic fluid was around 10 gallons and flooded the operating room. When I awoke my nenatoligist wanted to know my wishes and I said save her if at all possible. She survived 11 days before the diagnosis was confirmed at which time we had brung her back to her birth hospital to finally meet her sisters and extended family up close. We took all kinds of photos but none will ever replace what we lost she would be 10 months old coming up on her 1 year birth 10/26/2010 she passed away 11/06/2010 and she will forever be ours in our minds and our hearts.