Sunday, November 22, 2009

Ebstein's Anomaly

We had quite the whirlwind of a weekend. It all started on Wednesday when we met with the perinatologist. He took a look at our baby's heart and told us that he felt like the condition was severe enough that we needed to meet with a specialist from Primary Children's Medical Center as soon as possible. He called up his doctor buddy and was able to get us scheduled for an appointment on Friday afternoon.

We left that office with a temporary diagnosis of something called Left Ventricle Hypoplasia. At this point we were still very hopeful that things would be okay after a few surgeries and recovery. When we met with our doctor at Primary Children's, they did a very extensive ultrasound of the heart (called an endocardiogram) and took TONS of pictures of our little baby's big heart. Once he was done looking at it, he asked us to meet him in a more comfortable room where we could talk.

This was my first clue that something pretty serious was going on. My second clue was that there was a social worker waiting for us in the 'comfortable room'. Our doctor sat us down and explained to us that what our baby boy has is very rare. It is a condition called Ebstein's Anomaly. They only see about one to two patients with this condition per year. As if that wasn't hard enough to take, he continued to tell us that our baby happened to have the most severe case of Ebstein's that he has seen. Below is a definition of Ebstein's:



"Ebstein's Malformation is an abnormality of the tricuspid valve, the valve that allows blood to pass from the right atrium into the right ventricle. When the three leaflets that comprise this valve close properly, blood is forced to the lungs whenever the ventricle contracts. But if the tricuspid valve does not close properly, blood can leak back into the right atrium. With Ebstein's Malformation, the leaflets are improperly located, which often prevents them from coming together to form a tight seal.

In severe forms of Ebstein's Malformation, the leaflets may be far displaced into the right ventricle, causing the ventricle to be less muscular and therefore to pump less effectively."

From the book "It's My Heart" by The Children's Heart Foundation

Unfortunately, in our baby's case, the leakage is so severe that the size of the heart is already large enough that it is causing the lungs to not develop properly. Our doctor told us that if the baby does make it to full gestation (which he believes is a very small chance) that the baby would probably only be able to live a few days after surgery if at all because of the lungs condition.

We then were given a whole bunch of pamphlets and information on support groups that we could come in contact with (parents who have had late miscarriages, infant deaths, etc.) by the social worker. I was trying so hard to hold back the sobs. I felt numb, helpless and scared. We got out to our car and I lost it. I couldn't help but think about how I would most likely not get to hold the baby boy, who happened to have the hiccups at that very moment in my tummy, in this life. After a few moments of crying and praying... my husband and I both felt an overwhelming sense of peace and comfort. We know this was only possible because of family and friends who had been praying for us and our baby boy.

We met with our family doctor today and updated him on everything that we had found out this weekend. We made plans to deliver here, rather than at Primary Children's, in the case that the baby doesn't make it full term. It was hard, and I try not to think about that day.

The crying usually only comes in the quiet times when I am alone with my baby. We are just taking one day at a time right now. I am determined to just enjoy the little kicks and hiccups while I still can.

I am so grateful for my faith and the comfort that it brings. I know that it is the only thing getting me through this difficult time and I can't imagine making it through without it. I don't write this post in the intent to have a pity party, but rather to give an update since I have been so public on this blog with my pregnancy. We are grateful to all of you who have prayed for us and kept us in your thoughts. We know that is the reason we have felt such great comfort during such a trying time.

If you are at all interested, this message as well as this one (more specifically the section titled "Not my will, but Thine be done") have also brought comfort.

18 comments:

  1. Thank you for sharing. I hope that through writing out your feelings you will find relief. Thank goodness for family and faith. What would we do without the Plan of Happiness. You are in our prayers everyday.

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  2. i love you so much, hilary! i'm so sorry you and your family have to go through this, and i too am grateful for the plan of salvation! you are an amazing person. your faith is so strong and you are such an amazing example.

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  3. I came across your blog a year or so ago through someone else's blog (can't remember whose). I have always enjoyed your posts, pictures, and your whole blog in general. You brought tears to my eyes tonight Hilary. I am too grateful for the faith you have of this wonderful gospel that we have been blessed with. Prayer is what will get you through.

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  4. I'm so sorry to hear about this! I will keep you in my prayers.

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  5. Hi Hilary, I'm not sure you'd know me, but my mom and dad live across the street from your Grandma Vey and I graduated from IF, I think, a year ahead of your class. I came across your blog quite a while ago and have always loved reading your posts. What a hard season this must be right now, but I'm so glad you have the comfort of knowing you're in the Lord's will...and IT is perfect, whatever it may be. You and your sweet family are in my thoughts and prayers.

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  6. hil,
    so sorry to hear your news. you are so inspiring. i love how honestly you were able to write this post. your strength is amazing. thank you for reminding me of the small miracles.
    love em

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  7. p.s. we live really close to primary's. please don't hesitate to ask for anything when you are ever in town in the future. i'll email you our cell phones.

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  8. Hilary, probably didn't expect a post from me, but just wanted to let you know that we will be praying for you. We see Primary Childrens about once a month right now for our baby, and your comments become very real to us. I remember the peace that comes only through the Atonement, and I am so grateful for it. Tiffany mentioned that you had posted on both your family blog, and your personal blog, and I thought I would just write a few comments. Keep me posted, if you don't mind. You are in our prayers.
    -Dave

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  9. Hilary,
    I am so terribly sorry for you and your family. This is such sad news. We will pray for your strength and peace.

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  10. I am here from Sarah "Redhead Recipes". Reading this made me cry. My heart aches for you which is weird for me because I don't even know you. But women and mothers are connected forever.

    I hope you enjoy being a mother for a short while. Remember that you are still a mother. A nursing baby doesn't make you a mother. A growing baby in your tummy does.

    You are in my thoughts and prayers. And I am not just saying that as a cliche. You really are.

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  11. I just found your blog through Emily. What a beautiful post and expression of a mother's feelings you have written. It was a privilege to read about you and your baby.

    Recently, my niece has had a similar experience to yours. She and her husband went in for an ultrasound to find out the sex of their baby and instead found out that he is in trouble. Apparently, he has some kind of bladder abnormality that is threatening his kidneys and possibly his survival. What a shock, as you know, to learn that there are problems where you expected none.

    Like you, she has shown immense strength and faith. What a blessing the gospel is in our lives. It moves me to read posts like yours and emails from my niece...to realize all over again what wonderful spirits have been reserved for this day. Both of you will be powerful examples of courage and motherhood to everyone who knows you. In fact, you already are.

    I will keep you and your family in my prayers.

    =)

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  12. What a heartbreak. I don't know you, but I'll be praying for you.

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  13. Your faith and strength are so touching. I will keep you in our prayers. Dorienne

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  14. your example and bright light has always brightened my day... and still does so. please know that you are in my thoughts and prayers. may the Lord bless your heart with peace and comfort

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  15. Hilary~
    I just wanted you to know that we will pray for you and your family. My heart dropped as I read your post. I am Shay's cousin and have been following your blog for a while. My eyes are full of tears and my heart breaks for you... but you are amazingly strong and I admire that. Good luck.
    Hillary K.

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  16. Hilary,

    My name is Meg, I'm a friend of Hannah's. We were in the same ward as Hannah and Jason in Hawaii. I just wanted to say how sorry I am about your little boy. That is devastating news... I had a little boy in May that had to be born at 21 weeks because my water broke and he was just too small to even have a chance of making it through that. Something that I've found that has helped me a lot in the last six months is talking to other moms who have had similar experiences. If you ever, ever, ever want to talk please do not hesitate!! My e-mail is naturallymeg at gmail.com and my family blog is megsnest.blogspot.com. If you have any questions on what to expect afterwards, how to handle other people, anything, please don't hesitate. I'd love to help in anyway that I can. I'm so sorry again, I hope that you can feel our Father in Heaven wrap his arms around you and your family right now. What a blessing to know that this little boy will be a part of your family forever and you will have the chance to raise him someday.

    Love,
    Meg

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  17. Hello I wanted to let you know your not alone. My name is Nicole and in 2007 I lost my angel Alexa to Ebsteins. Our Docrtors also said it was the most severe they have ever seen and they had to do an emergency c-section at 30 wks because she was going into heart failure. Mind you I had been in the hospital for almost a month myself. She fought very hard night and day for 3 months in the NICU and then was able to come home. Doing awesome and progressiong every day on Feb. 3rd at 8 months old her heart stopped. She is now my personal guardian angel waiting for me to hold her one day again. Hardest thing ever!!! I am now an RN and pursing myself in a career in health care spending so much time in hospitals and dr. offices, I owe it to her!! I still dont really understand why she's not here even knowing alot more medically about her condition its hard being my baby girl. Feel free to email me and chat! God Bless you and your Family!!
    born2fly07@gmail.com

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  18. Thought you might like to know that The Ebsteins Society has loads of information on the condition as well as a forum for those affected. You may have already come across it but if not, then I hoe it helps you.

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