Parents: Jackie and John
Hometown: Crystal Lake, Illinois
April 19, 2002 – March 3, 2003
Claire Jacqueline’s Story
Jackie and John learned of baby Claire’s diagnosis at 34 weeks into her pregnancy. Their 20 week ultrasound showed some abnormalities, but knowing they would carry to term regardless of the result, they opted not to have an amnio. Ultimately, later on they did choose an amnio, and the FISH results were positive for Trisomy 18.
Jackie recalls, “In those first days following the news, we were numb and in a state of denial. How could this be happening to us? How could God allow such a thing to happen? How would we make it through? Our coping mechanism was to find out as much as we could about Trisomy 18 – from the Internet, from the multitude of specialists we were referred to, from other parents. Very little of what we learned was encouraging, most was very sad. This condition was repeatedly referred to as “inconsistent with life”. We made plans for our baby girl under all circumstances. Telling our other two children, ages 7 and 4, was heartbreaking, as was telling our friends and family. No one knew quite what to say to us, and we didn’t know what to say either. We decided that for whatever life our baby girl was to have, she would be loved, comforted, and deeply respected.” Claire was born early in the morning of April 19, 2002 after a very short labor. Having been diagnosed with polyhydramnios, the doctors chose to break Jackie’s water and induce labor. “When my water was broken at the hospital, the gush of fluid and the quick shrinking of my uterus brought on very intense contractions. Only 3 contractions after that, she was born!”
“She was blue, but breathing on her own. We were so thrilled and so scared, all at the same time. We immediately had her baptized. The hospital staff was wonderfully supportive, even though many of them had no idea what Trisomy 18 was. Together, we read medical books and learned. And we all loved Claire. Our kids were so proud to come to the hospital to meet their tiny baby sister. Claire weighed just 3 pounds 4 ounces at birth, by far the tiniest baby we’d ever seen! While Claire needed a feeding tube at first, she was eating from a bottle by her third day and continued to be a fighter. Initially, the doctors had painted a very grim picture of what our baby’s life would be like, and we had decided to find a pediatric nursing facility that could provide Claire with the care she needed. In the eleventh hour, realizing that Claire needed only what every new baby needs, we decided to bring Claire home. It was a day we will never forget. After 10 days in the hospital, our baby girl was coming home!”
From the beginning, Jackie and John agreed to make Claire as comfortable as possible. They chose comfort care, and opted not to pursue life extending treatments; in keeping with their feelings that they would always choose a path that both respected her life as well as her diagnosis. Once they had Claire at home, Jackie and John began writing Claire’s journal each day. “Our family and friends wanted so much to know how things were going, yet recognized our need for space to get used to having a baby like Claire at home and getting some sleep too! We were happy, yet anxious for the time when Claire would leave us. The doctors quoted us the statistics way too many of us have heard, so we prepared ourselves that Claire would only be with us a short time. As the days went on, we adjusted to life with a new baby.” Jackie talks about life with Claire, “As parents, we have often been told that we’re the role models for our kids, that kids follow our lead. But in those early days, I know that it was my kids that became a role model for me. Claire’s big brother and sister weren’t afraid to love her, to get nose-to-nose with her and treat her just as they’d treat any other sibling. And, I needed to see that. At times, I was afraid to love Claire, knowing she was going to die way too young. But, watching my children, and they way they loved her unconditionally, gave me the strength I needed to give my all to this fragile little baby.”
“As the weeks went on, Claire continued to gain weight, very slowly, and to get used to being in the middle of the commotion that was our family. Around 6 weeks, she began to have some problems with apnea. At first, these were just short “blue” spells and they passed quickly. Then, they began to become more frequent and longer in duration until they were to the point of occurring about every 20 minutes over a 24 hour period. Our doctor called in the hospice nurse who informed us that Claire was probably beginning the end of life phase. We were devastated. We encouraged family to visit as soon as they could and prepared our kids for what we thought was inevitable. In a surprise turn of events, Claire had fewer and fewer apnea episodes each day, and after a week, the hospice nurse stopped coming, as she determined that this was not Claire’s time. Imagine our surprise! What a roller coaster ride this was going to be!”
Jackie shares how her faith played a role in her journey with Claire, “We believe that only God has the decision to start or end life. Thus we did not consider pregnancy termination, even when it was offered at 34 weeks. This was the reason we chose the path of comfort care for Claire. While we struggled with understanding why God chose this life for Claire, we supported the reality of it all.”
“In December, Claire started what was to be a string of fevers. Since her ears were low and small, the doctor couldn’t really see well enough to determine if she had an ear infection or not, so we started her on antibiotics, thinking she had one. She’d get better while she was on the medicine, but as soon as it was done, a day or two later, she’d have another fever. Again, she’d be back on an antibiotic. Early in January, she got pneumonia. She was in the hospital overnight and came home on oxygen. Our little fighter had survived this, but the next week was critical. She continued to be very weak, so later that week, we had a naso-gastric tube placed, to be able to give her the nutrition she needed to make it through this. Her fevers continued on through most of January and into February. Finally, she seemed to get a break. She was eating really well, getting great marks from her physical and occupational therapists and smiling more often. We had begun to think that maybe she was one of the small percentage that would make it to her first birthday.”
“Then, in early March, her fever returned and early in the morning on March 3rd, she took her last breath. Her heart simply could not go on. She was in her Daddy’s arm with Mommy holding them both. Our hearts were heavy with sadness, yet we were thankful that her end was quick and painless. Claire was not in distress in any way. We waited for about a half-hour, to see if she’d take another breath (some of her apnea spells had been over 20 minutes). When we realized that she was gone from this earth, we took her to the hospital and called the funeral home.”
Jackie has many special memories of Claire’s 10 months of life; she is especially fond of “the feel of her tiny fingers clenched around my pinkie, the softness of her hair after her bath, the way she would hang her leg over her bath “hammock” to get her toes in the water, and her cute snoring when she was sleeping.”
During Claire’s memorial service, John set up his laptop next to the guest book at the church. Everyone could see a continuous slideshow of their favorite pictures of Claire. They also continued to play this at the gathering in their home that followed the church service. There were additional pictures of Claire on display at the church and in their home to focus the memorial on her life and the blessing she was to their family. “We celebrated her short, beautiful life at a memorial mass that Thursday. Her remains were cremated; and we are holding them until the time that either my husband or I die and she’ll be buried with us, so she won’t be alone. We have started a memory box and will keep her most precious things there, close to us – her baby blanket, her teddy bear, dried roses from the memorial service, her baptism garment.”
Jackie is especially thankful for the technology available today that made sharing Claire’s life with others so easy. “I setup a website and kept a daily journal so that family and friends could get the latest update while still giving us the space we needed. Only after her death did I fully appreciate how many lives she touched…her website was read daily by many faithful followers throughout the country!”
Jackie reflects, “I think the biggest lesson we learned was that as mother and father, you are the only ones that can be an advocate for your child, and the child is yours. We found many in the medical community offering advice based on science and numbers, yet we made our decisions based on love (while certainly giving lots of considerations to the science!) and we have not regretted them. We felt it most important that Claire be a part of our family, as much as her health would allow. Some recommendations that professionals made would have taken us in a different direction and, while we were scared and unsure, we used our hearts more often than our heads as our guide. The other big lesson was that while professionals do know the science and the statistics, they don’t know what that all means for your child. Until that child enters this world, there is only so much they can tell you and then, the rest is up to your baby and God. We learned to let God take his rightful place in the driver’s seat…although we never left the car!”
“While no one can quite prepare you for what life is like when a child like Claire comes into your life, we look back and truly can appreciate the time she was with us. We have learned some tough life lessons, yet know our family ties are as strong as they have ever been. We have new confidence to face whatever life challenges will come our way. We know that we have the full support of each other and the friends and family that surround us, and that we can count on each other to step in when we are weary on the journey. And, the love we share runs deeper than we ever knew.”
“Thank you, Claire, for giving us this wonderful gift. You were truly our miracle baby and we will always love you.”