Charlotte May

We decided on Charlotte May Hendrickson.  No, I did not deliver her. She is happily kicking me as I type this.

Yesterday Chris and I had an appointment with our perinatologist, Dr. Gainer. We had scheduled this appointment months ago and we were going in to find out if I needed the cervical stitch or not. A big day!

It ended up being a lot bigger than we planned. We received completely devastating news. The ultrasound tech was looking at all of the anatomy and showing us our perfect baby girl. Perfect nose, toes and profile. She took a pretty long time, maybe fifteen minutes and kept saying, "Just looking at the blood flow here". I asked her if there was some kind of defect and she said she couldn't tell me without the doctor. Which is completely normal so Chris nor I thought anything of it.

Our Doctor came in and I told her how much I liked her and how comfortable she made me feel. She really is the best. She thanked me and quietly did the ultrasound all over again. She stopped and looked at us with sadness in her eyes. She said there was something wrong with the baby. Immediately I started to think the worst, that she will die. She told us that her umbilical cord only has one artery, where there should be two. I had absolutely no idea what that meant so I started sobbing. She grabbed my hand and said when that happens, there is always a more severe problem.

Charlotte has a Diaphragmatic Hernia or CDH. She started by telling us how extremely rare this is. Like 1 in 3,500 rare. And there is only a 50% chance of survival. Basically, there is a hole in the diaphragm (the muscle under the lungs that is responsible for breathing) that allows organs from the abdomen to move into the chest cavity. This prevents the normal development of the lung on that side and may also affect the growth of the lung on the other side. Which, when born, makes it very hard to breathe. This was all formed at four weeks. There is no reason, it just happens to really unlucky parents. And Dr. Gainer said the survival rate of this is so bleak that most women choose to terminate the pregnancy. Which just breaks my heart even more. There is still a 50% she could live and we will fight for that. 

So far, only her intestines and her stomach are up in her chest. If her liver moves up, there is no chance she will survive. I'm just realizing I might sound like a robot- right now I kinda am. I feel numb but still in disbelief. 

Although I was sobbing, I think I laughed. What are the odds? Again? And to our first baby girl. Only a 50% and that's only if her liver doesn't move up into her chest cavity. If it does, then her chance drops to 15%. Chris and I were both in shock. I actually handled it the same way I did when they told me Conor had died. All I kept saying was "Okay", "Alright". To be honest, I am still in shock. I can't believe it. 

From the outside, she looks completely normal. We saw her nose, her chin, arms and legs and feet. Everything is in tact, but the inside is severely, well, screwed up.

As if this is not enough, there are chromosome defects that commonly accompany the single artery umbilical cord defect. Downs Syndrome, Trisomy 13 and Trisomy 18 are very common with this defect. Don't get me wrong, I would love a child with Downs but the odds of me getting one are only 1%, it's the other two that I can't bare because they are fatal. She said I can take a blood test, which is now done through my blood, no amnio needed, to find out if she has one of the three chromosome issues. There is a chance she could not. But there a higher chance she could. If she does has one of the Trisomy's then, she said, we take as many ultrasound pictures of her, carry to full term and hold her has long as we can, essentially waiting for her to die. 

Chris and I talked about it and we are going to do the blood test. I would rather know and start preparing. Trust me on this, I would. So Wednesday I take the test and we hear back 7-10 days after. If she doesn't have any of the three, the goal is to carry to full term, which is already my problem, deliver and she will be immediately taken into surgery. Which is scary enough by itself but she added that if they don't get the trech in Charlotte's mouth fast enough after she is born, she could breathe in her first breath and suffocate because it would be like breathing in cement. Her lungs will have not had the time to form normally and expand.

 She explained to us because I think she could tell by look on our faces we weren't catching on to how serious this is, that I will have to deliver at the University of Utah Hospital where they have the best Pediatric Surgeons and NICU. 

Because we still weren't getting it, she told us that Utah Valley Hospital (where I delivered both Owen and Conor) handles the minor stuff like intestines being born outside of the body. That's minor compared to what little Charlotte has only because it is affecting her lungs. 

As long as she is inside me, she doesn't even know there is a problem. She isn't struggling, she isn't hurting, she is happy and kicking and healthy. It is as soon as she is born that the fight for her life begins. So right now we wait for the blood test, the results and we watch her liver. There is nothing anyone can do but say I'm sorry. So I am writing this to let you know that there is nothing you can do, but say I'm sorry. I have never asked for prayers and to be honest I'm not quite sure what to ask you to pray for. Peace, for Chris and I, for whatever happens. 

We are most devastated by the very real fact that we could bury another baby. Obviously we are not hoping for that but it's hard to have faith when we've dealt with losing Conor so recently. We are doing as well as we can. Trying to stay positive, but right now I'm just broken. This makes me want to scream and cry all at the same time. I hate this. I hate that Owen may not have a sibling in this life, again. It is killing me to see how excited he is for her. He even cleaned her baby bottle out today with a wipe because he "didn't want hers to get sick". He already calls her "baby chawat". Anyways- that's what we know so far and this blog will be my therapy and journal again so you will be updated. Thank you in advance sweet friends for the encouraging and uplifting words. 


Sarah

Comments

  1. Oh Sarah, my heart aches for what you are having to go through. Yes, I will be praying and fasting for you, Chris, Owen, and your sweet family. Love you girl!

    ReplyDelete
  2. Sorry does seem so pathetically inadequate. I will be praying for a miracle.... in what ever form the Lord chooses to provide.
    All my heart felt love will be directed your way

    ReplyDelete
  3. We love you Sarah and will pray for peace and miracles. My cousin has trisomy 18 an has some disabilities, but also loves shoe shopping.

    ReplyDelete
  4. I'm so sorry Sarah. I wish there was something I could say, something I could do, to help or take away your pain. I will keep you and your family in my prayers.

    Michelle Stevens

    ReplyDelete

Post a Comment

Popular Posts