So as I mentioned before, I am 7 months pregnant with Tristan Neil Wyatt, due October 19. I have to have a c section so they will probably take him the first week in October. Right now it as hard for me to look at scheduling that surgery as not scheduling an execution date.
The technical diagnosis is- get ready for this- “unbalanced right dominant atrioventricular septal defect with aortic atresia and possible heterotaxy”. (I had it memorized the 2nd day after the diagnosis!) In lay man’s terms it means that the left side stopped developing because of a structural defect that caused the blood to all be diverted over to the right side. On top of that, the aorta also stopped developing and is a dead end, causing baby’s blood flow to reverse back to the heart. There is a missing valve and structures that should be on both sides of the heart are all on the right. The left side of his heart is virtually non-existent.
Now the possible heterotaxy makes things even more complicated and despite my medical background I have a hard time understanding it. Heterotaxy in general means internal things aren’t where they are supposed to be. The stomach can be on the reverse side, liver might be mid line, bowels may be flipped, there may be the absence of a spleen or many small spleens. From the organs they could see, like the stomach and liver, things appear normal. The cardiologist suspects it, though because of what he saw in the structures of the heart. We probably won’t know for sure until he is born.
The last complication is that Dr. Petrowsky could only see one pulmonary venous return and he is not sure if it is fully developed. This is the condition which I am praying hardest against. If those veins are not there, we will have no options for treatment, as far as I understand. We will have 2 more fetal echos done before Tristan arrives and they will be looking for a better view of those veins, and the confirmation or dismissal of the heterotaxy.
After the level II ultrasound, we were originally told that it was a hypoplastic left heart, (HLHS). I shed a few tears after learning that his life expectancy would be only about 20 years, as the surgery only helps the symptoms and cannot repair the condition (called palliative). I thought about how worried we would be as our son went through his teenage years with the possibility that his mended heart could wear itself out any time. I thought about the stress of the hospital visits and side effects that would plague his short life. But then I felt grateful that it was a treatable condition, and at least we would have those 20 years, even if no new breakthroughs in treatment emerged in that amount of time.
At the echo, which was supposed to confirm the HLHS, we learned all that I explained earlier, and as Neil and I drove home I was overcome with the “loss” of this baby. Dr. Petrowsky, the pediatric cardiologist explained that if treatment were possible, it would be the 3 stage surgery they had explained to us for the HLHS. The thought of all that pain and risk for such a tiny body overwhelmed me. And then the “if”.
It was for that “if” that we met with a the nurse and social worker of what they call the “Rainbow Kids” team. Rainbow Kids is there for pediatric patients and their families who decide not to treat a terminal condition, but instead opt for comfort care. As we had talked to a portion of the team, which consists of a pediatrician, nurse, social worker, and a few others, I felt peaceful about it. I felt like, at least if surgery seemed like such a long shot or wasn’t going to be an option, at least my baby could go peacefully and painlessly. And I would have some great people there for support.
So if we chose comfort care, how long would we have? I had forgotten to ask. Christmas. Christmas, I thought. If this baby could just hold on for 3 months, we could get through Christmas with some cherished memories of Tristan’s brief stay.
They said that if we chose this option, they would discharge me from the hospital as fast as safely possible so we could spend as much time at home with Tristan as possible. They also gave me a book to read, if I wanted, called “Waiting with Gabriel” , by a mother of a baby that they decided to choose comfort care for his HLHS. It was here that i learned Tristan could hope for 2 weeks at the very most. Two weeks. That’s like a long vacation, a pay period, half of a month- not a life time! But for Tristan it was a long life time. I was broken all over again. First 20 years they told me, then my only bright hope was 3 months. Now, 2 weeks at very most. Two weeks to spend with our son. I was devastated.
With each new detail of information, Tristan’s life expectancy got shorter, and as soon as I would gain acceptance of the expectancy, it would be cut shorter. It all seemed so unfair.
But I know Heavenly Father has his hand in this, and I trust Him. As hard as it is to think of losing a baby, I know that things will be ok. I know if Tristan leaves us for Heaven, I will see him and hold him and love him again. As upsetting as the circumstances are, I am not angry (though I was), or bitter. I do not blame God for having caused this. It simply is the way it is, and though I believe God could heal this, I am fairly certain that he won’t; that he will allow this because there is something bigger that I cannot yet see.
8 comments
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July 21, 2009 at 5:15 am
Brian & Amy
Arae, I am deeply saddened and sorry to hear of your’s and Neil’s hardship with your son. I wish there were something I could do. You’re right. It isn’t fair, but I’m glad that you trust Heavenly Father. My thoughts and prayers are with you and your family.
Amy (Miller) Monson
July 21, 2009 at 6:08 am
Esther Longmore
Arae,
My heart just ached when I read your news! I can’t begin to imagine what you and Neil must be going through. I didn’t even know you were expecting. I know that you will be blessed, even if it’s an in an unusual, unhoped for, or unexpected way. I’m thinking of you and will be praying for you. Please let me know if there’s anything I can do to help ease your pain.
Hugs!
Esther
July 21, 2009 at 12:19 pm
David Gehris
Arae, As always your strenght shows through as you wrote about Triston’s conditions.
You know of our love and concern for all of you and have our support and prayers.
Heavenly Father will be there for each of you as you continue to deal with theses trials.
Remember this- we are immortal beings having a mortal experience. This is just a momentary stop for all of us. It is not the beginning nor the end.
Our love to you,
David & Deb
July 21, 2009 at 12:47 pm
Karen Myatt
Hi Arae,
Remember me? I am Kali’s mom. I was greatly burdened (see Mosiah 18:8) for you by your story of Tristan. My, what you are going through. My little sister had the very same situation a few years back. It was very difficult for her; but like you, she had a bunch of mortals there to give her the support she needed. She hasn’t been in active in Church for years, but my family is and she was greatly blessed by their ties to the Lord. I am so happy you are turning to Father at such a hard time as this. You are a strong young woman and it is clear you love the Lord. He will bless you not only through your own prayers, but ours too. He will bless you with strength derived from that great marriage you talk about. He will bless you through His great Priesthood that he has given to your wonderful husband. Use it. And last but certainly not least, he will put people in your path who understand and will be a huge and great part of your life.
I love you tons, Karen Myatt
July 21, 2009 at 1:49 pm
Jenny and Mike
Neil and A .Rae-
I am so glad you put up this blog to keep everyone updated. Everytime I try to talk to Neil we get interupted since work is so busy. I have been praying for you and your family since I found out. I am so sorry!! I am so grateful you have the gospel to get you through this hard time. If you need anything EVER, please let us know. P.S. I am linking you to follow up 🙂
July 21, 2009 at 4:37 pm
Kat Roberts Nelson
All our love A Rae. I know I haven’t really seen ya since HS, but my husband and I are sending you good thoughts and prayers for peace and comfort. If things get too tough, and you’d like to have some in home care for Tristan and yourselves while he’s here, let me know. My mom is now a hospice nurse, and they do occasionally do babies. Hospice is more for the family than the patient though, and my mom’s group is awesome and super supportive.
-Kat and Jason Nelson
July 21, 2009 at 4:41 pm
Kiera
Hey
I am so sorry to hear of what you are going through. That must be so difficult. I will keep you and your family and your sweet little boy in our prayers!
Kiera
August 17, 2009 at 4:47 pm
Lila and Kelly Thompson
Dear Amanda, I have been very emotional about your baby boy, and the hardship that it must be for you to carry on right now. He is safe and warm there inside of you and next to your heart. It is such a special thing to carry a baby inside, so close so precious……such a short time to keep him just for yourself, such a short time here on earth. My heart is so tender for you and Neil and the girls, little as they are they still knowl. I know that the comforter is with you because of the things you have written. May he continue to bless and strengthen you all. I have tried to write what I have been feeling and I always find it is a very hard thing to do. Very seldom in these things do I find that words, for me, convey the emotions that are behind them. I hurt with you and love you all. Heavenly Father is all wise and loving. He will reach out to you with His tender mercies because you are keeping Him where Tristan is, next to your heart. Aunt Lila