Parents: Mindy and Steve
Hometown: Scio, Ohio
Carried to term, lived 5 days
Abigail Grace’s Story
When they found out in January that they were expecting their 3rd child in September 2002, Steve and Mindy were really excited. Their other children, Nathan, 4, and Sarah, 18 months, were excited as well. Despite the fact that Mindy was 39, they did not opt for AFP testing or amniocentesis, since they knew they would not terminate the pregnancy even if problems were found.
When a choroid plexus cyst was found in an ultrasound, they went for a Level II U/S and there they first heard the words “Trisomy 18”. The genetic counselor explained that they wanted to look for other markers that might indicate Trisomy 18. The Level II ultrasound did not show any of the typical markers, especially clenched hands. It did show that they were having a girl! There also appeared to a small amount of excess fluid around the baby’s heart, so they recommended a fetal echocardiogram to see if there really was a problem. Steve and Mindy decided not to have an amnio unless the fetal echo found some problems.
The fetal echo took over an hour, and Mindy began to think the doctor had found something wrong. And he had. His main concerns were a VSD and a possible coarctation after birth. The doctor strongly encouraged them to have an amnio to rule out chromosome problems, and they agreed.
It was hard waiting for the results, even though they really felt everything would be fine. When the results came in, the doctor didn’t beat around the bush. He said the baby had an extra chromosome in the 18th position. He also asked if the genetic counselor had explained this to them. Mindy replied that she had and said, “it’s pretty bad isn’t it?” What an understatement! He said he would have the counselor call her. Waiting for the call, Mindy remembers being stunned and devastated. Against the odds, the baby did have Trisomy 18! The call was a blur; the counselor offered to send some resource materials, asked if they had any questions, and reiterated some of what they had discussed earlier. Mindy recalls, “I was pretty strong about it overall, but I did start crying a couple of times.”
It was Independence Day weekend, so the family was all together for the long weekend. Mindy spent hours on the internet looking at Trisomy 18, and everything pointed to the fact that their baby was most likely to be stillborn, or if she was born alive, she would likely live only days, hours, or even minutes. Mindy writes, “I wondered, ‘How do I even deal with this?’ I spent a lot of time hugging my other children, praying, and of course, crying. The praying was hard, because I didn’t know what to pray for what would be the best for her, our other kids, and us? I really longed for her to be born alive so we could at least have some time with her, but I had to be ready if she wasn’t. So, once again, we went with the odds and tried to prepare ourselves for her to be stillborn or for us to have only minutes with her. And we prayed for the strength to deal with whatever outcome we got.
“The emotions were really intense, and they kept changing. We started making some hard decisions: whether to cremate or bury her, what type of memorial to do, and other issues relating to the impending death of our baby. And I was amazed at how angry I was about being pregnant and how much I hated it at that moment. I felt like it was a constant reminder to me and everyone else who knew that my baby was going to die. I also felt like it was such a waste to have to go through all of it when my baby was going to die. And it was almost unbearable to think about those who didn’t know and were going to ask me cheerful questions about the pregnancy. How could I endure this until she was born? I just wanted it to be over. I cried hard and long until I was totally exhausted. Later I discovered that it is common to hate the pregnancy for a while, but that it would pass quickly and that feeling did pass in a couple of days.”
They decided to tell everyone at church (Steve is the minister) and at the factory where Mindy is an engineer, thinking there would be less awkwardness if they were open about it. They did it mainly via email and by telling a few people whom they asked to tell others. That kept them from having to repeat it over and over, but it let everyone know. They also told people not to be afraid to talk to them about it. Mindy is so glad they made that choice; the response was overwhelming. The number of people who shared hugs, tears, words of support, and prayers was invaluable to them. For the most part, they were able to talk with others very matter-of-factly about the situation without losing control of their emotions. As a result, many people commented about how “strong” they were. Mindy says, “We knew that it was because of all the prayers on our behalf and the peace, comfort, and strength provided by God. Our faith is in God and we trusted that He would comfort us and help us through this so that we could some day join our daughter in heaven.”
They then set out to learn as much as possible about the situation so they could make the best possible choices regarding Abigail’s care. They met with a geneticist who explained all the possible effects of Trisomy 18 on each of the body’s systems. One thing he explained was that a Trisomy 18 baby has a susceptibility that a healthy baby doesn’t. That is, a T18 baby will often succumb to things that would not be fatal to a healthy baby. This was important for them to hear, because it helped them understand that fixing some of their baby’s problems would not be helpful to her because the Trisomy 18 and its associated complications would not be fixable. As a result, they decided to create a birth plan to ensure that they could keep her as comfortable as possible. In addition to the actual birth plan, they had decided they would do comfort care for Abigail. Their decision was in large part based on a strong faith in God and knowledge that Abigail would only be healthy and whole once she was in heaven. Mindy explains, “We felt that putting her through painful procedures or tests just to keep her with us here on earth for a few more days or weeks was selfish; that is, it would be only for our benefit, not hers. So we decided we were not going to put her through any surgeries, but would try to make her feel as comfortable and loved as possible while she was with us. As hard as it would be to let her go, we will get to see her again for eternity in heaven!”
At the same time, they decided to help Nathan and Sarah get to know her and be ready for what would happen. They encouraged them to lean over mommy’s tummy and say, “Hello, Abigail!” and “Wake Up, Abigail!” At first, it was a very forced, false cheerfulness with the kids. It was so painful to talk to her and to have the kids do it. But over time, it became natural and they started thinking of her as baby Abigail who they loved, not as baby Abigail who has Trisomy 18. The kids started hugging her and telling her “goodbye” when Mindy left for work, and soon, thinking of Abigail and seeing the kids’ love for her was joyful and happy, not painful like before. They told Nathan that Abigail was sick and might not live, and so at first whenever they talked about Abigail, he would ask, “but what about ‘might not live’?” One day, he asked, “if she dies, will we have another baby in a few months?” He also asked how long will she live? And one time he said, “maybe she’ll be well for one day.” Sometimes it made Mindy cry to answer his innocent questions and to think that he had to be asking those questions at his age. But he handled it very well, knowing that Abigail would be going to heaven to be with Jesus and that someday “he’d be old enough to go be with Jesus, too”.
They began to appreciate the last few weeks of “normalcy” that they would have; they were a family enjoying the baby that mommy was going to have, and their lives were still pretty much the same as before for a while. But it was still really hard, mainly because there was so much uncertainty, so much they didn’t know. “Will she live at all? Will we have minutes or hours? Days or weeks? Will we bring her home?” Thinking about the possibilities and trying to prepare was overwhelming and exhausting. They stopped even trying to decide what to wish for; they just kept praying that God would give them the wisdom to make the right decisions for her care and for helping their other kids deal with it, and that he would give them the strength to deal with whatever happened.
A c-section was scheduled for September 4th, and on Monday, August 26th, they made final arrangements with the pediatrician and went home to try to relax for a few days. At 4:00 AM on Tuesday, August 27th, Mindy awoke with a start as her water broke. It was as if Abigail had said, “now you have all the plans made, so you are ready for me to come.” Mindy comments, “God was showing us that no matter how well we planned He is still in control.”
As they put in her IV, Mindy started explaining, “This baby has Trisomy 18” and describing what that means. The nurse would listen and then say, “tell me more”. The neonatologists had been planning to meet with all the staff before the scheduled c-section to tell them about the birth plan so everything would go smoothly. Unfortunately, they didn’t have that luxury, so it had to done on the fly. Steve had brought a copy of the birth plan, which they quickly copied and distributed and everyone did an amazing job of communicating things in a short time. The suddenness and flurry of activity really distracted them from concerns about Abigail’s health, as they were worried about the kids and communicating their birth plan.
Mindy recalls, “Next thing I knew, they were getting ready to operate, Steve was there, and the nurse came in to take pictures. They said, ‘they’ve made the incision,’ and I said, ‘Wow, already.’ Once she was born, there was very little noise or activity. They weren’t really working on her, and they called Steve over to her. I couldn’t hear, but they had told him that she wasn’t breathing (she had an Apgar of 1) and they wrapped her up and gave her to him. I asked him what was going on, and he said, ‘she has a heartbeat but she’s not breathing.’ So I touched her face and said, ‘poor little thing’ and talked to her, telling her we loved her. I didn’t even cry; it was all happening so fast. We figured she would live a couple of minutes and that would be all. But while Steve was holding her and we were touching her and talking to her, she started to breathe. She even tried to cry. After almost 30 minutes, it was evident she was breathing and seemed to be doing ok, so they weighed and measured her. She was 4 pounds, 2 ounces and 17 inches long. Then they took her footprints and Steve followed me to recovery carrying Abigail.”
In recovery, they put her on Mindy’s chest, skin to skin, along with warm blankets, and she really began to pink up. Within a few minutes, they brought the kids in, and the hospital photographer came in to take pictures. They dressed Abigail up in an outfit and the hospital took an entire roll of film of her, instead of the usual 3 photos. She wasn’t even cleaned up very well, but no one was sure how much time they would have. Then Mindy held her again, and the whole family gathered around the bed to get some family pictures. This all took place in the recovery room before 10:00 am. The entire family got to hold her that day, including both of the kids.
A little later, they had to decide how to feed her, and they decided to give her an IV initially to help her blood sugar, and to put in an NG tube for feeding. They took her to the NICU to put them in. It seemed to take quite awhile, so Steve went to see why. When he got to the NICU, they motioned him in and told him they had put in the IV, but were having trouble with the NG tube. It kept coming back out of her mouth or her nose. Steve said he told them, “esophageal atresia”, and the doctor asked if they could x-ray her to be sure. Steve said OK. It confirmed the atresia (the esophagus did not connect to her stomach). Mindy writes, “We felt that the atresia was God’s way of telling us that she was not going to be one of the exceptions that live longer. God had created her, and she was not able to eat. We did not decide that, God did. And so, we accepted Abigail the way God made her and decided to love her, hold her, and make her as comfortable as we could until she went home to Jesus.”
They needed to decide how she would be most comfortable during the time she had left. They talked to their pediatrician, who is an expert on palliative (comfort) care, about it, and she explained that if they removed the IV, Abigail would eventually get dehydrated, which would not be uncomfortable. Her body would create endorphins and she would eventually slip into a coma-like state and just go to sleep. If they kept the IV in, they would have to move to a new site in 3 days anyway, and the IV’s would have to keep being moved; resulting in pain and discomfort that wouldn’t fix her problems. They decided that removing the IV was the best thing for Abigail’s comfort.
That night, they stayed up until after midnight, holding her, afraid to go to sleep since she started having frequent apnea episodes. These episodes were not uncomfortable; she appeared to be sleeping and then would suddenly wake up with a cough or sneeze and start breathing again. They learned that she had more trouble when lying on her back, so they held her on her side.
The next day, they were elated that she was still here. God had already given them an entire day, now they were getting more! The nurse removed the IV from Abigail; she had a large splint on the arm and her hand was covered up. After it was removed, Abigail almost immediately rubbed her hands together like she was so glad to have both hands free again!
Then it was time for the long-awaited bath that they had promised the kids! The nurse put the kids on the bed with Abigail and let them help wash her. What a chaotic, but wonderful time! They all got some terrific memories and some really good close-up pictures of their beautiful Abigail. That whole scene was so joyful that it was much like a normal visit with a healthy baby. Steve and Mindy treasure that memory. Afterwards, the kids got to lie next to her and look her over up close; many more wonderful photos were taken at that time. Indeed, Wednesday was Abigail’s strongest day, and it was the most normal day. That is, all the family was there; the kids were playing with their Thomas engines, there was a lot of chaos and commotion. It was truly a joyful day.
That afternoon Abigail turned blue for quite a while and they thought she might be getting ready to go. Mindy held her for awhile and cried and said goodbye and told her it was OK if it was time for her to go to be with Jesus; she didn’t have to fight to come back if it was getting too hard. But Abigail wasn’t ready to go yet. She came back. And Mindy discovered that, “I really was OK with letting her go, and that I would be OK if I were holding her when she died. What a sense of peace that gave me about the time she had left.”
By Thursday morning, it was clear that she was getting weaker, since she was having more apnea episodes and was not crying as loudly or frequently. They decided that they didn’t want another chaotic day like the previous one. So for Thursday and Friday, things were very calm in the room, and they focused all their attention on holding, loving, and caring for Abigail.
On several occasions, Abigail had apnea episodes lasting up to 10 minutes, and they thought it was the end several times. But by this time they were truly at peace and ready to let her go when it was time. They began to be careful not to try to revive her during an episode; they wanted to let her and God decide when it was time to go, not them. They were totally amazed when she made it to Saturday morning. “We had not had going home as a goal, but it was certainly much nicer to hold her as I left the hospital, just like I did with my other kids. I was overwhelmed and started crying when I said, ‘we’re taking her home!’ It was a cool, sunny, beautiful day, so appropriate for the joy of taking her home. When we got outside and were waiting for Steve to get the car, there was a light breeze blowing. I could tell Abigail was feeling it, too, that it felt different from what she had felt before.”
Saturday afternoon, they got to show off their pride and joy to one dear family from their church that came to visit and bring food. That night, as on the other nights, they took turns holding Abigail through the night. Around 1:00 AM Sunday, September 1st, Steve said, “I think she’s gone.” So he gave her to Mindy and she held her for a few minutes and said, “Yes, I think you’re right.” They were both relieved that she had gone to be with Jesus and that she had gone so peacefully. They set out to make hand and foot castings of Abigail. It was a cool evening, and they had the windows open. It was very quiet and pleasant, with the sounds of the crickets outside the window. Steve got the casting kit ready, while Mindy undressed Abigail, changed her diaper, and cleaned her up. They both commented how she really didn’t need a diaper, but it’s only right for a baby to have a diaper on. Mindy also got to look her over and see once again just how beautiful she was, from head to toe. As they did this, they talked a little quietly and calmly, but mostly were silent. Mindy remembers kissing Abigail several times, and thinking, “I didn’t kiss her enough before.” They then looked through her clothes to pick the outfit to bury her in. After getting her dressed, they took several photos, then wrapped her in her blanket and took a couple more.
They waited 2 weeks to have her memorial service a celebration of her eternal life so they could be sure to have everything just how they wanted it. They carefully selected the hymns to sing, scriptures to read, poetry, and the message that Steve would present. They also prepared a slide show of Abigail’s photos set to Twila Paris’ “Visitor from Heaven”. It was truly an uplifting service: emotional, but happy, as they rejoiced with Abigail on her new perfect body and eternal life with Jesus. They were so proud to share their precious gift with our friends and loved ones.
“We are so thankful to God for the blessing He gave us in Abigail, and for the 5 wonderful days we got to spend with her. We got to say hello, hold her, bathe her, love her, and say goodbye. We are so thankful that God was so merciful to us; we couldn’t have asked for anything more. While we are grieving her loss, we are completely at peace about our decisions for her care and comfort, and are relieved that she no longer has to struggle to come back from her apnea episodes. We are happy that she was held in loving arms virtually every minute of her life, and that she will now be held in the even more loving arms of Jesus for eternity. Her life was truly a blessing to us and to many others as well. We have learned much, and we know we have much still left to learn from her.”
In Memory of Abigail…
One of the things that helped Mindy heal was creating a website in Abigail’s memory: A Trisomy 18 Journey – Abigail Grace Wilsford. She wanted to honor her memory and share her life with others as well as try to encourage others who found themselves heading down the same path. Many hours were spent on the website, and much healing has occurred because of them.
Another thing that they did was build a playground in Abigail’s memory at their church. “It has provided much more comfort than I even imagined it would. We held a dedication ceremony for the playground, which was another step in my healing. The time to be together in her memory on such a joyous occasion was truly a blessing.” to peace with it. It’s not leaving them behind but taking them with us always, but in a very different
“As I heal, my relationship with Abigail is changing. I am starting to move her from being here with me physically to being in my heart. I think we have to make that change in the relationship and come to peace with it. It’s not leaving them behind but taking them with us always, but in a very different way. And I don’t think there’s any way to rush it; it just happens gradually over time. But it does happen. Yes, I miss her so much and I want to be with her, but she has given me a huge gift and the person I am becoming is much better than the person I was before her.”