How do you tell the story of a life that some people believe was never lived? My Sara Joy who was stillborn did have a life. Only her life just consisted of the warmth of my womb.

Last February we were elated to hear the news that we were pregnant with a third child. We already have one living child who was six at the time, her name is Kami Grace. We had lost a child two years before due to first trimester miscarriage. My husband also has seventeen year old named Ivy; she was living in Arizona at the time.

The pregnancy brought many complications almost from the very beginning. I was put on bed rest before I was three months along. I suffered from sever hyper emesis. That is just a fancy word for very, very bad morning sickness. I suffered every hour of the day. I had to be hospitalized over 50 times before the end of the pregnancy. Eventually the doctors gave me a Zofran pump. Zofran is an anti-nausea medication that is usually given to chemo patients. I had to keep a constant injection of the medication in my leg that was pumped by a small machine that hooked to my belt.

We thought the worst was over and were anxiously awaiting another ultrasound at 20 weeks. We had waited because Ivy was coming to visit for the summer and we wanted her to share in the experience when we learned the baby’s sex. It was the first Friday in July and we all piled in the van to go to the doctor’s office. Right away we could see that the baby was a girl. Then in the next moment everything became quiet. We would never be the same family again. We heard the words “Congenital Diaphragmatic Hernia” for the first time. It was at that moment that Ivy decided not to return to Arizona for her senior year. She would stay with her family because she knew that she would be needed.

Initially, we did not think this was devastating news, I have had friends who had hernias and they were okay. We did not realize what we were facing until we looked it up on the internet. All we could find were very bleak websites with horrifying news. Through the grace of God, my husband, Frank found the Kay-Kids website. We began corresponding with Dr. Kays immediately. He was so generous with his time, giving us the answers and sometimes giving us the questions. We were well equipped by the time we had to meet with the local specialists. They told us that Sara had less than a 10% chance. From everything we had talked to Dr. Kays about we knew our baby would most likely require ECMO. We were told that our local hospitals did not have that available in the NICU. In addition, the doctors seemed just plain confused and contradicted everything we had learned, sometimes even laughing at us when we asked about different courses of treatment that were proving successful for Dr. Kays. The doctors could not figure out how to compute the lung to head ration correctly.

We went to the University of Iowa in Iowa City, about a three hour drive from our home. I underwent an amniocentesis. We consulted with the doctors and were given the grave news that they had a zero percent survival rate with their ECMO. We were advised several times that the “easiest” thing to do would be to terminate the pregnancy. It was not difficult to decide what to do next.

We met with Dr. Kays in Gainesville at the end of August. By all accounts our little one was doing as well as could be expected. She was still quiet small for her gestational age, but she was a fiesty little thing. During the EKG on her heart she got ticked off at the doctors for performing such a long ultra sound poking around on her. The doctors nicknamed her Scrappy Doo. Like the little guy from Scooby Doo who thinks he can beat up every one. Hers was a somewhat healthy heart typical of the kinds you see when a baby has CDH. The heart was pushed all the way over to the left, followed by the stomach and part of the liver. She also had a horse shoe shaped kidney.

We found Dr. Kays to be a very warm and truthful man. Something about him gave us the feeling he was answering to a divine calling. We felt safe in trusting him. Ultimately the plans were all set for me to go to Florida in my 38th week. We had gone through all the tasks of finding air fare, places to stay, rides, scheduling appointments. Who would be watching our girls in Iowa while I would be away for several months?

I was an emotional wreck. I hated the idea of being apart from my family for so long, especially during the holidays. But, we were all determined to go to the ends of the earth for our little Sara Joy. The next few weeks were such a blessing I convinced myself that everything would be alright what ever the outcome. I had to make plans for the arrival, for care of a sick child, and still keep in the back of my mind the possibility of a funeral. I wanted to be realistic. I remember how much I enjoyed each little kick and hiccup. She was indeed living with in me.

It was Labor Day weekend and we spent it with extended family. It was an emotional weekend saying good-bye to everyone. The next Tuesday I don’t think she really moved a whole lot and by Wednesday I was getting no movement at all.

We found out that our sweet Sara’s heart had stopped beating and she peacefully left this life for her new and eternal life. We had just seen her heart beating a week earlier in Florida. At the final ultrasound you could see that the intestines had pushed their way into the chest cavity. It was just too much for her little heart to take.

It was bittersweet. I had prayed that if the Lord was going to ultimately take her that he take her from my loving womb to her new home with him. That prayer was answered. She was delivered by cesarean just a few short hours later.

She was absolutely angelic. She had the sweetest little face. Her cheeks were still furry from being born too soon. She had itty bitty ears just like mine, her Daddy’s crooked fingers and her sisters’ big feet. She had such long legs at nineteen inches long and just three pounds nine ounces in weight.

I did keep her overnight in the room with me. I rocked her and sang to her. I tried to pour all the love of a life time into that short night. By the next day she was beginning to deteriorate and I thought it would be more respectful to simply let her earthly body go. Handing my precious baby over to the nurse for the last time was the single most difficult thing I have ever had to do.

We had a lovely funeral and she was buried close to our home. I visit her grave often. I take her things and our family is now learning to live with a “new normal”. We speak of her every day. The girls talk to her and sing to her. We collect pennies together as a family with the year of everyone’s birth and put them in a piggy bank on her grave. I do not worry what people think when I tell them I have two children living on earth and two living in heaven. This is my reality. It is not something I would have chosen, but rather I was given this. I look at the whole situation and find the blessings Sara and the Lord has given all of us.

Life is different now. I don’t look at anything the same. The sadness can be debilitating at times. I find comfort in knowing that she is perfect and not struggling to just take a simple breath. Our family is closer than it ever had been and she is a huge part of it.

Days are sometimes hard and the nights even harder, but I look to the Lord for my comfort. I hope that if any one else ever has to go through anything similar they can find the blessings that a tragedy can give them. If you find yourself with questions, fears or a need to talk please feel free to call or e-mail me. Shaynimiller@aol.com and my phone number is 515-282-3925. Good luck and God Bless.