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| Zach already loves baby girl! |
I highly recommend that if you do not know the basic anatomy of the heart that you read the information I provide towards the bottom of this post. It will help you better understand what you are about to read.
Two weeks ago at our 20 week ultrasound Phil and I found out from our Maternal Fetal Specialist (MFS) that she thought baby Noakes might have a small hole in her heart. She had us wait two weeks to see how the heart developed and then she did another ultrasound at 22 weeks (this past Monday) and confirmed that she still saw a small hole. On Tuesday we saw a Pediatric Cardiologist. He also confirmed the hole in the heart and diagnosed it as an endocardial cushion defect. It is an overarching term with a bunch of different subcategories under it. He didn’t want to place her into one category because he said that he doesn’t want us to focus on the diagnosis. He said that just because something is diagnosed as something doesn’t mean that is the prognosis. What baby girl does have is a small hole in her septum. It starts in the bottom part of the atriums and extends a tiny bit into the top part of the ventricles. Because at this stage in development her heart is only about the size of a thumbnail the cardiologist couldn’t tell us what type of defects there are with the valves. What he could tell us was that he is seeing a tiny bit of leakage back into the atrium.
What does this mean?
- It means our daughter has a congenital heart defect.
Will surgery be necessary to repair the defect?
- Yes surgery is necessary. Sometime in the first year she will have to have open heart surgery to repair her heart.
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| Thank you Terrell for this outfit! It made me laugh outloud. You know me so well :) |
When will her surgery be?
- She will determine when her surgery will be. While all babies are in utero the mother does most of the work for their heart. After they are born their body takes over the workload. If she has trouble breathing, sustaining weight gain, or has abnormal pressures in her heart then those are signs that it is time for the surgery.
Why doesn’t she have surgery right away?
- While they can do surgery right away they prefer not to because they would like the heart to develop more. They have found that they usually have better long term prognosis if they wait.
What is the prognosis?
- The cardiologist said that prognosis will be determined by the success of the surgery. So basically we won’t know the long term effects until after the surgery. After the surgery he will be able to give us a better idea of whether she will have to have more surgeries in the future and if there are any other long term after effects.
What is the survival rate for the surgery?
- He said that there is about the same mortality rate for this surgery as there is for an appendectomy. However, if there are any complications or infections (like with any surgery) then there can be an increased chance of side effects.
Where will the surgery take place?
- She will have surgery at UVA
Will I be able to deliver her normally?
- Yes.
Does this mean she has some other type of disability?
- No. However if you know much about disabilities you may know that this type of heart defect is often associated with Down syndrome. This does NOT mean that she has Down syndrome. We actually did a bunch of screenings earlier in the pregnancy and they all came back with very low probability. There still is a very small chance the she could have down syndrome (1 in 2 thousand some chance) that could be confirmed with an amniocentesis. We do not want an amniocentesis. We are fine knowing that there is a very small chance and finding out for sure at birth.
This is what we know right now. Every day we are coming up with more questions. We will know more after we meet with the surgeon, after baby Noakes is born, and after she has surgery.
How are we doing?
It has been a tough week. It has been a lot to process. We are still processing. We are starting to get used to this whole idea of having faith in God in the face of all our challenges.
The main things I think about are moments. The moment I get to hold my daughter is my number one moment. Actually my first question for my doctor was will I be able to hold my daughter after I deliver her? She said yes. I wasn’t sure what she would say because I didn’t know whether she would have to be whisked away to surgery or NICU right after I delivered her. That should not be the case. Holding my living, breathing daughter for the first time is something I can’t wait for. I ache for it.
It is amazing how so many of the fears that I had projected onto this pregnancy, because of our experience with Emily, have dissipated. All pregnancy long I have been very focused on getting past 29 weeks (when we lost Emily). Now I KNOW that we will. I KNOW that I will deliver this baby. I KNOW that I will hold my living child in my arms.
The moments that I try not to think about are things like possibly having to explain to her that she has a boo boo on her heart that needs to be fixed or later on that she had a boo boo on her heart that was fixed and that is why she has a mark on her chest. I dread the moment I have to walk away from her or see her taken away from me to go into surgery. That is all too close to our final moment with Emily. I fear the moment the doctor comes out of surgery to tell us what happened. Will I have to hear that I’ve lost another child? I just don’t know if I can handle that. Tears will be streaming either way.
I fear missing a sign that something is wrong either before or after the surgery and not getting her to the doctor in time. I am worried about long term neurological effects of the surgery if something goes wrong. I have a lot of fears.
When we first found out a few weeks ago I was angry. I felt like we deserved to have an easy pregnancy. After all we’ve already been through now we have this that we will have to deal with for the rest of our lives?! That she will have to deal with her whole life! It didn’t seem fair. Now somehow I have peace with it. Don’t get me wrong, it stinks. It stinks really bad. But I have peace. Anger will get me nowhere. Anger won’t make her heart better. Anger won’t make this easier. So instead I choose to inform myself with what we will be facing and to be positive about the future. Most of all I choose to have faith in the future and in God’s plan.
I want to celebrate this baby. Yes she may have a heart defect. That doesn’t make her any less in my eyes. She is our child. She is wonderful. She is perfect.
Please join Phil and me in being positive and excited about our child. The last thing we need is pity for everything we have gone through and will go through. We would prefer to surround ourselves with love, faith, hope, and strength.
We are excited about our daughter and can’t wait to meet her in a few short months!
BASIC ANATOMY OF THE HEART
How the Heart Works
Do you know basic heart anatomy? Well neither did we until this past week. Here is a very basic explanation in my words of how the heart works. I think I got everything right but there is a good chance I didn't explain something correctly.
The heart is divided into 4 chambers. The chambers are divided vertically by a muscular wall called the septum. It is divided horizontally by valves.
Here is how blood flows through the heart:
Unoxygenated blood flows from the BodyàRight AtriumàRight VentricleàPulmonary ArteryàLungs which makes the blood oxygenatedàLeft AtriumàLeft VentricleàAortaàoxygenated blood flows into the body
There are various valves within the heart the only ones you need to know about are the tricuspid valve and the mitral valve. The tricuspid valve is between the right atrium and right ventricle. The mitral valve is between the left atrium and the left ventricle.
To learn more about the heart try reading these websites:
Endocardial Cushion Defect
To learn more about endocardial cushion defects try reading these websites:
Video explanation of endocardial heart defect
Love,
Megan
You're all three in our prayers, girly. I just love where your heart is. I love your honesty. I love how excited you are for this little girl. And I CAN NOT wait to see what an incredible Mommy and Daddy you will be (and already are.)
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