Jennifer
Mom to Ryan James
September 17th, 2010
Fort Worth, Texas

March 25, 2010, there were two pink lines and then on another test the word “pregnant”. After taking 3 different tests, I allowed myself to be excited! My husband and I had struggled to get pregnant with our oldest child, so I was shocked to be pregnant within 3 months. The plan was for this pregnancy to complete our family of four. 

My pregnancy was nothing out of the ordinary initially, just some morning sickness and being tired. We shared the news with family and friends just after my first OB appointment at 6 weeks. We followed it up with another ultrasound at 10 weeks to make sure everything was looking okay, and our little one looked to be right on track! The next 8 weeks were the last eight weeks of our “normal” life. At 18 weeks, 5 days, I had another ultrasound. My husband and I did not notice anything strange during the ultrasound, we were excited to see that beautiful heartbeat and learn that we were going to have another son. Everything felt great and we both returned to work and shared the excitement. A few hours later, I was in my office and happened to check my cell phone, where I had a message. My OB had called, left me a message and asked for me to call her on her cell phone.

Sitting in my office, alone, I made that phone call and can remember knowing something was wrong as soon as I heard her voice. I don’t recall all of the conversation, but I remember hearing the word “fatal”. She informed me that my son appeared to have a skeletal disorder that was fatal. She gave me a specific diagnosis, but at that time, the specifics did not stay with me. She talked to me for awhile, told me I would be referred to a specialist first thing on Monday and then told me to call over the weekend if there was anything I needed. But what I needed, she couldn’t provide. I never doubted the words she told me, I knew from that moment that my child would not grow up in my home. After the phone call, I contacted one of my coworkers and through tears, just asked for her to come to my office. Once she was there, I blurted it all out, but all I remember was telling her that my baby was not going to live. I tried calling my husband at work, but he works in an emergency room, so I was having difficulty getting ahold of him. It was one of the hardest things I have ever done, to tell my husband that his son was going to die.
The next few days are almost a blur. We took our 3 year old to my brother-in-law’s house and then we went to the mall, where we could be normal and sit among a crowd. During lunch, we talked about names, because before we got any more news or made any decision, I wanted our son to have a name. Out of nowhere came the name Ryan James and it was perfect. When I later looked up the meaning of Ryan, I learned that it is little king, and from that moment he became our little king. I did call my OB over the weekend, just to hear the information again. Since I was the only one who heard it from a physician, I was starting to feel like I was going crazy and imagining the whole situation. How I wish that had been true!
The following week, we had a level two ultrasound and met with a genetic counselor and a perinatologist. During that appointment, we were informed that my OB had made the correct diagnosis, Thanatophoric Dysplasia, a fatal skeletal dysphasia. The simplest explanation is that our son’s lungs would not have room to develop due to a small chest cavity and there was no cure. In fact, thanatophoric means “death bearing”. The physician told us we had two options, to continue the pregnancy understanding that our child will die either before birth or shortly after, or we could terminate the pregnancy due to a fatal diagnosis.
A few days later, my husband and I sad down and made our choice. I told my husband that I could not intervene, that right at that moment my son was not in distress and his heart was beating. He was safe as long as he was in me. We made the agreement to continue the pregnancy to term if possible, as long as Ryan did not show any signs of distress and my health was not at risk. We met with a neonatologist to discuss plans for delivery and informed her that we did not want any medical interventions other than anything necessary to keep our son comfortable. We wanted Ryan’s life no matter how short it would be, to be spent with us, no poking, no prodding, just being loved by his parents.
The next several weeks were a roller coaster of emotions. I would normally wake up and then get hit by the realization that the child I was carrying would not come home from the hospital and I would breakdown in tears in the shower. I would then pull it together and do what needed to be done for the day. I shared Ryan’s story with anyone who would ask. We went to baseball games and football games and family functions and Ryan was there for it all. I spent a lot of time just with my hand on my stomach thinking of my son and trying to cherish the time I had. One of the big struggles I had, was that I rarely felt any movement. Ryan’s arms and legs were underdeveloped and he just was not a very active baby. Once he found a comfortable position, he stuck with it! Without that movement, I was always scared that he would die and I wouldn’t know it. Some wonderful people that I worked with, made arrangements where I could have his heart tones checked any day I needed to. Normally, about three days a week, I would take time from work and go listen to his heart beat. I was the most beautiful sound and those were the moments I felt closest to Ryan.
A repeat c-section was scheduled for 36 weeks, but on September 16th, when I was 29 weeks 4 days pregnant, I started having contractions and my fluid was leaking. I remember when my OB walked out of the room after telling me that we would have to deliver that night, I looked at my husband and told him that I was not ready. My husband made some quick phone calls and got some blankets from our car that had been made just for Ryan and I got prepped for the c-section. One of my co-workers showed up at the hospital just before the c-section started and was allowed to come in with us to take pictures.
At 1:55am on September 17th, Ryan James was born. Ryan did not make a sound when delivered. He was quickly handed to his dad and I just remember hearing the most wonderful words, he was alive. I will forever remember the image of his little body encased in his dad’s strong arms and seeing his mouth take three little breaths. My son was alive and perfect in my eyes.
I was able to hold Ryan before we left the OR and for the two hours that he lived, he was held and loved tremendously. We told him how much we loved him and how proud we were of him. And we told him it was okay to let go of the fight, that we would be okay. There was never a moment of pain, just peace. That day, we were able to share Ryan with his big brother, take family pictures, introduce him to his grandparents and to friends. It was a day I will never forget.
Exactly 6 months from the day I had the positive pregnancy test, we buried our son.
It has been 6 months since Ryan was born and I miss him every day. But in spite of all the pain, I am grateful that Ryan is my son.

 

 

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Comments

  1. Anonymous says:

    What an amazing story you have shared about sweet Ryan. I know it's going to help someone.

  2. Holly says:

    Thank you for sharing Ryan!!

  3. Anonymous says:

    Your story touched my heart! I have a friend who went through something very similar & her Lewis lived 3 hours…the most amazing 3 hours of her life! Hang in there!

  4. Stephanie says:

    I'm so very sorry for your loss. I'm so happy (through my tears) that you were able to hold your little boy, and that he knew nothing of this world but love and peace. I can't even imagine how much your heart aches for him.

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