The Diagnosis

On January 6th, I was awake by 5AM. Having hardly slept that night, I should have been tired. Not that day. I was wide-awake with excitement and anticipation. We had been looking forward to this day for a long time. The last time we had seen our baby was only 7 weeks along… a wonderful experience, but not much to see. We got ready, and headed to Dr. Felix's office around 7:30.

By nature, I worry about everything. Every appointment so far had brought relief whenever they pulled up a strong heartbeat to show that baby was still in there. For some reason, this morning I was not worried. I was thrilled to finally get to see our little one and find out the sex. I had felt his movements for a few weeks at this point, and the past week I had started to feel them much more frequently. Honestly, this was the first time I felt confident that our baby was fine.

There wasn't a wait to get into the ultrasound. We were the first ones there. The second the picture came up on the screen, it was the most amazing thing. The baby was moving and kicking and I literally sighed with relief that I truly had nothing to fear. Almost immediately, baby revealed to us that he was indeed all boy. We already knew that his name would be William Jude. We were so excited. The ultrasound tech was commenting on how active he was, and he seemed so happy.

A few times, the ultrasound tech (we later found out she is actually an OB) mentioned he was moving too much to see the heart like she wanted, and that Dr. Felix would probably order another ultrasound. This actually made me more excited because we would get to see Will again! After we were done, she printed out pictures and gave us a disc with pictures to take home. We had to go out to the waiting room to wait to see Dr. Felix. Eagerly, I looked at the pictures and thought about my wonderful baby boy.

During this wait, Jared mentioned something about the baby's heart, but I brushed it off. All the u/s tech had said to us was that she was unable to get a proper view. Apparently, in my excitement I must have missed something that Jared picked up on.

A few minutes later, Dr. Felix herself poked her head out and called us back. It was normal for a nurse to come get us, but I thought nothing of this at all. She showed us to a room, and sat down and immediately the tone was quite serious.

She told us that the u/s tech had seen something with the baby’s heart that had her concerned. It may have been a bad angle, but it didn't look good. Dr. Felix told us they were getting us in immediately to have another u/s at Maternal Fetal Group, where another OB would do an u/s, with better equipment. I was scared, I cried, but deep down I still believed it was just a "Bad Angle." After all, Will had been extremely active the whole time and his heartbeat sounded perfect.

I remember right as we came out of the office, I recalled Dr. Felix telling me before that she would not sugar coat things. So I said, "You're not worried, right?" She looked right at me and said, "I am worried." She gave me a hug, and a box of tissues and took us up to get directions and set up a time to meet her afterwards.

The drive to Maternal Fetal group was only about 15 minutes, but it seemed a lot longer. I was nervously texting my mom, but again I still felt optimistic that the better equipment would reveal a healthy heart. Every time he had a strong and consistent heartbeat, even on the ultrasound we just saw.

We waited a long time for that ultrasound. I hadn't eaten anything all day, except a glass of orange juice before the appointment that morning so I was starving. When they finally called us back, the u/s tech took about a hundred pictures of Will's heart. He was very active at first, but eventually settled down. Then they moved us to another room and another u/s tech was taking pictures.

No one was saying anything, and anytime we asked if they knew what was going on, they would answer, “the doctor will be right in to answer all of your questions.”

Finally, the OB came in to take over. I saw her face as she looked at the screen. I saw her bite her lip and I remember thinking, "I hope that is just a weird habit of hers." Because most people bite their lip when they don't want to say something horrible.

I couldn't take any more silence, so I finally asked what was going on. "Let me finish the scan, and then we will talk about it," was her answer.

She finished the scan, and came and sat by us with a paper and pen. This really gave us a slap in the face, because we knew that if nothing was wrong, she would simply tell us. She began by drawing a diagram of a healthy heart. We would not need diagrams if our Will was okay. Then, she drew another heart, with one side much smaller than the other. That is Will's heart. She told us he has Hypoplastic Left Heart Syndrome. The left side of his heart is severely underdeveloped, and will be unable to support his circulatory system once he is born.

She briefly explained that this meant he would need multiple surgeries once he is born, and it will depend on what is causing the underdevelopment (if it is the artery, or the ventricle itself) to determine the effectiveness of the surgeries.

"Do you have any questions?"

"What is the possibility that you are wrong about this?"

"Very small."

"Can this correct itself before he is born?"

"No."

There it was. She was not even close to Dr. Felix in terms of compassion, not to mention we had only met her 15 minutes ago. It was harder for me hearing this from a complete stranger, let alone one who showed no emotion whatsoever.

We had literally no time to process this, because we had to be back to see Dr. Felix right away. She said that is exactly what the OB who did our scan there was concerned about. We sat in the exam room as she explained that we would have to switch hospitals, be referred to a pediatric cardiologist, and be assigned to a team of high-risk prenatal doctors at Vanderbilt Hospital. She said we are welcome to continue routine care with her, but that it might be more of an inconvenience because of the likelihood that I would be seeing the high-risk doctors multiple times a month, maybe even a week.

She told us that his birth would be scheduled, possibly a c-section. And she would not be doing it. On top of all the heartbreak, I also lose my doctor whom I have grown to trust, besides the fact that her compassion is almost unheard of in her profession. I know this seems silly in comparison to what we were facing, but it did not help to ease my mind.

The only thing she told me that I could construe as anything positive is that while Will is still in utero, he is safe. His circulatory system is well supported by my body and it is unlikely that I will have any pregnancy complications. The real complications will come once he is born and his heart will be expected to support his body by itself. As a new mother, you want your child to need you, but it is so hard to hear that not only does he need you, but his life altogether may depend on you.

That being said, it was obvious on the ultrasound that he has no idea what is going on. Right now, he is as carefree as anyone can be. That is a feeling I would love to be able to share with him. I hope he will continue to feel that after all is said and done.

Feeling him move is different now. What was originally the source of such joy and excitement is now so bittersweet. Half of me is happy to know how content he is. The other half of me aches to know what is waiting for him out here. All of me wishes I could keep him safe and sound forever.

It was hard for us to wake up the next morning and realize it was not a dream. What should be the most fun and exciting time of our lives has turned into a nightmare. It is hard not to break down and let your mind wander to all the "what ifs." And although the doctors assured us that there is nothing we did to cause it, those thoughts still tend to creep into your head as hard as you try to keep them away.

Despite all of this, we do not believe that God is punishing us. We believe that he is trusting us. He has given us one of his most special children who needs the most love, because we have the power to provide it. And we are already doing everything we possibly can for him. If this had to happen to anyone, I have come to terms with it happening to us. I could not even bear to wish this would happen to anyone else in the world. Of course, Jared and I would trade places with Will in a second, but that is just not a reality.

On top of that, he already has such a large support system. It may not seem this way, but he is a very lucky boy. I feel amazed and blessed at all the people who have reached out to us in the short time since we have received this news. We feel confident that all the prayers and positive thoughts will continue to grow, and have all the power in the world to do anything the doctors can not do. That is called a miracle, and Will is going to be one.

My wonderful parents dropped everything on Friday and drove down to spend the weekend with us. It has helped so tremendously, and we were able to laugh a little bit today. We went and bought Will some new clothes, and even went to see a movie. We have said thank you to them many times, but I don't know if we can ever truly express what their support meant to us this weekend. They really helped to ease our minds, just knowing that they love Will as much as we do.

I know there are others who wanted to be here this weekend, too, and we are glad to know we have so many kind friends and family members. It is good for us to be able to live life as normally as possible while we can, though, so I think maybe it is for the best right now.

In the meantime we are trying to hash out details as far in advance as we can plan, but have so far had very little time to research. As of right now, we are planning on seeking care with Cincinnati Children's Hospital. They are one of the best pediatric hospitals in the country, with a higher proven success rate dealing with HLHS. It is lucky that I will be able to move in with my parents when the time comes, and continue prenatal care in Cincinnati so that we will be there when Will is born. I will have to go there in advance to meet with pediatric cardiologists. We have researched our options, but he or she will better explain them and give us more details on what to expect and how to be prepared. We will have another echocardiogram (this is the scan where they take a detailed look at Will's heart) within the next 2-3 weeks.

This will be very hard on Jared and me, because he will have to continue to work in Nashville. I am going to stay here as long as I can, but we need to do what is right for Will. Thankfully, modern technology will allow us to skype, and he will be able to come stay on weekends. It is going to take a lot of strength on his part, to be so far away from all of his family, but it is a temporary solution for the good of our little boy.

Meanwhile, we do not ask for anything more than your continued thoughts and prayers. We honestly believe in the power that all the positive vibes will have toward healing our little baby. We thank you for all that has been offered, and is continuing to be offered.

We truly believe that Will is going to live up to his name, and live his life to be a very Strong-Willed boy. That, along with all of the prayers and support, is going to make this miracle happen.

Here is a link for information about HLHS:

http://www.cincinnatichildrens.org/health/h/hlhs/

Please share this blog; we’ll continue to update it every step of the way to keep all of our friends and family informed.

We are open to questions and positive messages and will do our best to respond.


-Allison

This is Will's cute little arm.

Will's Grandma Paulett bought these outfits for him.  The one on the right says "little drummer."