Abigail Grace Wilsford
August 27-September 1, 2002

A Celebration of her Eternal Life:
September 14, 2002

Dear Brothers and Sisters in Christ, and Family and Friends:

Thank you so much for coming here today to help us celebrate the eternal life of our daughter and sister, Abigail Grace Wilsford. While our hearts are broken at giving her up, we feel blessed to have had her in our lives. She has changed us forever, and we want to share with you both our sorrow and joy.

We also wanted to tell you a bit about Abigail's story up until this day.  We have known since early July that Abigail would be a special child, sent to us by God for only a short time. We found out that she had a chromosome disorder called Trisomy 18, where she had 3 chromosomes in the 18th position instead of the normal pair. Trisomy 18 is the second most common chromosome disorder, after Trisomy 21 (also known as Down Syndrome). Unlike Down Syndrome, Trisomy 18 is usually fatal, with two-thirds of the babies not making it to term and 90 percent of those that do typically live no more than a few months. 

We were blessed to have discovered her condition in advance of her birth.  It gave us time to prepare intellectually, physically, emotionally, and spiritually.  Intellectually, we set out to learn as much about T18 as we could.  We met with physicians, specialists, and genetic counselors.  We searched the Internet and read as much as we could.  We listened to stories of others who had had T18 babies.  We learned that for T18 babies, it is as if they don't quite get finished developing. For example, their brains are not properly developed; certain neurons don't make it all the way to the outside of the brain but remain in little clusters throughout the brain. This means that they will frequently have problems doing basic, instinctive, functions like sucking, swallowing, and breathing.

Some other typical problems are holes in the heart that don't close, and organs that don't properly connect to each other. Additionally, T18 babies are usually small, as if they stopped developing and growing about the 7th month in utero. One other key thing was that Trisomy 18 babies have a susceptibility that healthy babies don't. That is, they succumb to things that would not be fatal to a healthy baby. This was important for us to learn, because it helped us understand that fixing some of Abigail's problems would not be helpful to her because the Trisomy 18 itself would not be fixable. 

We understood that if Abigail were born alive, we would not have a long time with her. So we decided to focus on making her time here on earth as comfortable as possible until she went to her real home in heaven.

Physically, we prepared by having Nathan and Sarah pick out a cuddly soft bear to give to Abigail, purchasing some cute outfits in which to take her picture, and getting a bigger memory card for the digital camera so we could take hundreds of photos.  Since we knew her time was short we began plans to make the most of every minute. This also involved meeting with doctors and staff at the hospitals to make sure they would help us with this goal. We developed a birth plan based on the possibility that we might only have a few minutes to enjoy Abigail. And we made plans for burial.

Of course, our path of education and preparation led us through the gamut of emotions.  From the devastation of finding out that Abigail had a genetic defect to the helplessness of knowing that she could not live, we cried. Again, the time we had before Abigail was born was a blessing allowing us to explore our feelings and come to peace with them. It also gave us time to prepare Nathan and Sarah by telling them Abigail was sick and might not live or be able to come home with us.

Our spiritual preparation was the most important and the easiest because we already had a knowledge of God and of His Son Jesus Christ.  We already had faith in the promise of eternal life we had read in the Bible. We knew and were confident that Abigail would be in God's tender care forever should she be taken early from us.  We knew that if we remained faithful having been baptized into Christ, we would join her in Heaven when God calls us home.  This strong faith became the foundation of every decision we would make. Indeed, we would not have to make some decisions because God and Abigail made many of them for us.

Abigail Grace Wilsford decided she wouldn't wait for the scheduled date of September 4; she decided she wanted to be born on August 27 instead.  She was born by c-section at 7:23 am and weighed 4 pounds 2 ounces and was 17 inches long.  When Abigail was born, her Apgar was 1 and she was not breathing.  Per our wishes, they did not resuscitate, but immediately the doctor wrapped her in a blanket, and gave her to us. 

We held her and said our goodbyes, thankful that we had a few minutes with her. Then, amazingly, we watched as she began to fight and started breathing stronger and stronger. God was gracious and Abigail decided to stay awhile. She began to breath on her own.  We were filled with joy.  Her daddy carried her to the recovery room where her mommy held her skin to skin.  We began to say hello to her and get to know her. The family came in a few at a time and we took pictures.

We soon learned that she was really a fighter. We found out some of the specific problems she had and realized that we would only have a few days with her. She had apnea episodes where she would stop breathing and then start again, and these episodes became more frequent as time passed. We decided to just hold her and love her every possible minute. She gave us time to say hello and to create some memories of normal activities: the kids holding her and giving her a bath, all the relatives holding her, and pictures of all of it. Except for a few times when we were just too exhausted, we held her all the time, even through the night. And when we couldn't, the nurses held and watched over her with love.

Each morning that she was still with us was an additional blessing. And we received another blessing when Saturday arrived and we got to leave the hospital carrying our precious daughter. We never dreamed we would have that memory!

Abigail died peacefully in her daddy's arms around 1 am on Sunday, September 1. Once again, God was good. Although we were exhausted, it was a wonderful, peaceful time to say goodbye. We got to take our time to make hand and foot castings, bathe her again, and dress her up in a special outfit.

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.

We are so thankful for your love and support throughout this part of our journey, and we know we will continue to need it for many days and years to come. Thank you for sharing in our celebration of Abigail's eternal life with us. We love you very much.

Steve, Mindy, Nathan, and Sarah Wilsford  (and Abigail Grace)

Abigail's Story | Edwards Syndrome Resources
Celebration of Eternal Life | Trisomy 13 Resources

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