Lindsay Marie Stroup

June 18, 1983 -  May 26, 1986

:Mars, Pennsylvania (PA)


 

"God does not make these things happen, but what he does do is give us strength as parents and caregivers to care for our children, the knowledge that is being learned every day to help us develop the best outcomes for our children, and most of all the love to help us grieve their loss and to know our little angles are safe by his side."

Christopher and I were married for 2 years and were ready to start our family. I was 22 years old and had a wonderful and uneventful pregnancy. I was 2 weeks past my due date so I was admitted for an induction. After 24 hours of failure to progress, a C-section was done. None of us were prepared for the news we would receive. Lindsay weighed 5 pounds, 12 oz. and was 17 ½ inches long. It was Father’s Day that year. We were told Lindsay had Down’s syndrome and a heart problem and would be immediately transferred to Children’s Hospital in Pittsburgh. I

I remember overhearing the staff in the recovery room unsure of what to tell me when I woke up. Friends and family were afraid to say anything and avoided talking about Lindsay. It was 5 days before I was discharged from the hospital and was able to see my precious baby. I can remember it like it was yesterday. Lindsay was absolutely beautiful. The good news was her heart defect was not life threatening. It was a septal defect that would close on its own.

We were bombarded by many doctors and their opinions. The one thing her Dad I knew was we wanted to take her home with us and away from those that looked at her as an experiment. I was a radiology technologist at the time, so I had some medical training. The first thing I did was remove any interns or residents from her care, attending physicians only. Chris and I went through the genetic testing to confirm the exact diagnosis. As all of us know, we starve for any knowledge we can find to help us. This was before the internet age and access to medical libraries was very limited. I found 1 small paragraph in a book published by the March of Dimes.

The genetic testing confirmed. We were told she was missing an “arm” of one of 13th chromosomes. The incidence is extremely rare and they were surprised she still was living. The first Genetic Doctor was extremely “cold” and it was difficult to accept his information. We decided to go for a second opinion and found a wonderful genetics specialist at Magee Woman’s hospital. The news was the same but presented in a more compassionate way. We were told Lindsay would most likely die before her first birthday. Infection would be an issue as well as seizures. We searched for physicians that we were comfortable with and would support Lindsay and us in a compassionate way.

We enrolled Lindsay in Early Intervention Services. Lindsay would be admitted several times in her short life. Most of the time is was for dehydration and infection. My pediatrician would often say he knew we really needed him when we called and we had done everything possible at home. It was great when she could stay at our local hospital because it was where I worked. I would work the night shift and could check on her frequently. The staff on pediatrics became our second family. The best weight for Linsday was 10 pounds. She loved banana baby food, ice cream and yogurt. Her head was the heaviest and she would always arch it back. Her skinny legs were so long. I was able to find a chair and have a tray built to support her. She would sit on the kitchen counter in her chair and throw measuring cups at me. I was so excited by these milestones. When her first birthday arrived we had the biggest part ever and when she turned 2 we were extremely blessed. We knew we wanted to have more children and were of course frightened. I became pregnant with our daughter Kara. We decided to not have an amnio done because it would not affect what we would do. We would accept another blessing and continue the pregnancy. Kara was born 8 weeks early and also had to be immediately transferred to the NICU at another hospital. She required intubation and was on a ventilator for about 10 days. Initially we were told she might have Down’s syndrome. I was able to get discharged from the hospital in 3 days. It is very traumatic to not be able to see and hold your babies after they are born. Kara’s genetic testing was normal and she improved in about 3 weeks and was able to go home. Kara was home for about 3 days when she stopped breathing, requiring her to be transported back to the hospital. She developed RSV and unfortunately Lindsay also became ill with RSV. The doctors at West Penn were awesome. They put both the girls in the same room for me. This was in March of 1986. I was able to bring the girls home just before Easter and they were able to go to church together. Lindsay never seemed to recover and gradually became weaker. We decided to not put her through painful procedures and wanted her be comfortable and be with her family. At the time there were not any palliative care programs for children in our area. The local hospice program was amazing with researching medications and ways to provide comfort support to Lindsay and us. This was new territory for them. They had little experience supporting parents of children. I had nurses from the ER that were my friends that took turns sitting with Lindsay and me. When Lindsay died we had so many mixed emotions. I was very restless, plus I had a 3 month old to care for. With caring for the girls I had neglected my own health and needed a hysterectomy. I waited until July to have the surgery.

Chris and I searched our lives and goals in life as they change drastically when you experience the death of a child. The doctors caring for Lindsay and Kara would say to me if I could care for my daughters this well, imagine what I could do for other sick children and their families.

I would start nursing school while working at Children’s Hospital of Pittsburgh in the radiology department. I would begin my nursing career in the NICU at Children’s Hospital. I also would work the pediatric surgeons and their prenatal diagnosis program. 5 years ago I was diagnosed with Multiple Sclerosis and had to leave the hospital setting. Caring for children is what I do best, so I was able to find a position working with a foundation and its program for children with special health care needs.

It has been 24 years since Lindsay was born, I think of her every day and the way she has blessed our lives and changed my path. Our daughter Kara is a senior education major at St Francis and wants to be a teacher. She is a college softball player and has proved with lots of love and care she can succeed. I have very few pictures of the 2 of them together because it was such a short time, but I know the bond was established. I firmly believe God chooses his parents very wisely and lends his special angles to us to forever change our lives and lives of the people they touch.

 When Lindsay died we received over 200 cards and letters, many from people we never met, but had knew her. Without Lindsay in my life I feel I would have never had the motivation to go to nursing school and spend my life caring and advocating for special needs children and their families. You develop empathy, insight and an understanding that is different. When Lindsay passed away a rainbow formed above our house and I felt a peace that told me my journey was just beginning. Kara often asked me if I was angry at God for Lindsay’s diagnosis and almost losing her and than my MS. I explain that God does not make these things happen, but what he does do is give us strength as parents and caregivers to care for our children, the knowledge that is being learned every day to help us develop the best outcomes for our children, and most of all the love to help us grieve their loss and to know our little angles are safe by his side.

Parents: Christine Stroup cstroup@zoominternet.net and Christopher Stroup
Sister: Kara Elizabeth Stroup



Kara, Lindsay’s sister