Finding Out

After three ultrasounds (21wks, 24wks, 27wks) in Bozeman to check for growth and development, we are sent to Dr .Damron in Billings for a better look at the heart.  Poppy’s position has made it difficult to see a clear view of the developing heart. Dr. Damron is a maternal fetal medicine doctor who specializes in high risk pregnancies.  My pregnancy was not otherwise ‘high risk.’

Brad got off work to come with me to Billings, and we left Crosby with grandparents for the day.  I was 28wks pregnant, and although not yet cautioned to be concerned, I had a feeling something wasn’t quite right.  My pregnancy had been the typical pregnancy.  A little sicker than with Crosby, and tired, but other than that I felt great!

We got to Billings a little early, found his office and waited anxiously.  The sonographer was very nice, but really quiet and serious.  I’m sure they are trained to be that way to a certain extent, but a little unnerving just the same.  The sonogram took over an hour, but she was able to get some great views of the heart.  During a break in the sonogram, Brad and I decided that if everything checked out that we would celebrate by having dinner at Olive Garden and maybe check out the mall and maybe get her a special little outfit in celebration that everything was good.  After that, Dr. Damron came in and did his own live read.  Within a few minutes, he turned to us and said, ‘your baby has a very serious congenital heart defect.  Your baby will struggle with her heart for the rest of her life.’  ‘Your baby will not be able to be born in Montana, she will need to deliver in Denver, Salt Lake, or Seattle; a place where she can receive surgery soon after birth.’  He was careful not to say the chances of death, but reiterated that fact that this is very serious and that there are no guarantees.  He suggested we meet with a pediatric cardiologist while we were still in town, Dr. Wiggins.  He called over to his office and got us in immediately.   Dr. Damron also assured me that there is no rhyme or reason for this, nothing I did or didn’t do caused this.  The is one of the first organs that develops, and it had been this way basically since conception.

We were caught so off-guard, in tears, shocked, panicked, sick to our stomach, tension headaches, hard to breath…all of it..we were a mess.  Why is this happening to our poor sweet innocent little baby?  We drove a few blocks over to Dr. Wiggins office.

Dr. Wiggins did a fetal echocardiogram, taking an in-depth look at Poppy’s heart.  He sat us down:

‘Your baby has Hypoplastic Left Heart Syndrome.  There are typically 3 options with this type of CHD.  1. Compassionate Care, where you deliver the baby, and keep her comfortable until she passes 2. Surgery, in which there are actually a series of 3 surgeries- this is typically how HLHS is treated if the heart is capable 3. Heart Transplant.  In your baby’s case, from what I can tell, she will need initial surgery upon delivery and then a heart transplant.  I don’t think she will be a candidate for the series of 3 surgeries typically used with this syndrome, because of a few things. Of course, a better view can be seen after delivery, but as far as right now, this is what I see.’

I had never in my mind thought it could be as serious as our baby needing a new heart.  The heart that she will be born with is not going to last her, not even a week without surgery.  What are the chances of a heart transplant for a tiny little newborn?  Totally sick to my stomach, but know that no matter what, we are going to fight for our baby.  If it’s God’s will to take her, then He will take her, but we’ve got to give her a fighting chance- whatever it takes.

He also went on to say that if all goes well, the typical life-span for people with HLHS is 20 years.  They typically have liver problems because of the stress it gets from the single ventricle heart supporting the body all on its own.  Also, these babies are typically a month behind cognitively when they are born, because of the lack of blood to the brain during the third trimester.  Some babies catch up, some don’t.  Most aren’t able to be star athletes, and girls won’t be able to have babies.  Her heart won’t be able to withstand childbirth.

We left his office so unsettled, physically and emotionally ill- I get a sick feeling just remembering it. We called our parents, both of us lost it.  We could barely get the words out. Needless to say, we did not celebrate at Olive Garden, or hit up the mall on the way out of town.  All we wanted to do was get home to Crosby.  What would all of this mean for him? It’s going to affect him in some way…how am I going to keep it together for him? I believe kids should see their parents show emotions, but I didn’t want him remembering mommy as always being sad.

It was a long drive home.  We listened to Matt Redman, just praying for peace and guidance.  Around Colombus, we both turned to each other and almost at the same moment decided that we should name her.  She’s our sweet girl, we are going to fight for her, she needs a name so that people can pray for her.  On the way over to Billings, we were talking about names, and my latest fave was Poppy Florence.  Up until then, we were between Lucy Christian or Eleanor Poppy.  Brad was surprisingly open to it.  So it was around Colombus we decided she would be our Poppy Florence.  The name already suits her.

8 thoughts on “Finding Out

  1. Thank you for sharing Christi! This put me in tears and I ache for you all! Did you guys suspect something was wrong with all the ultrasounds? It is such a joy to be able to see your baby during those, but when it’s mixed with fear… wow. You have been through a lot! Your faith in Jesus is obviously what’s getting you through and I admire that! Praying, praying, praying!

  2. I am praying for a miraculous healing! And also that God will continue to work through you for His glory. I love you all so much, thanks for sharing and for naming your precious daughter, Poppy!

  3. I found you through my HS friend Kendra Fox. She actually tagged me in a FB post because we have this experience in common. During my 3rd pregnancy, while expecting our first son, we found out that he had HLHS as well. Every story is different as are the paths we take and the reasons why. Reading your entry just put me back to those first weeks of learning about our Tristan’s heart defect and the emotional wreckage that followed. I look forward to following your journey and wish you strength and peace as your journey unfolds. I pray for your family, that you will find the answers and the comfort you will need. Thank you for being brave enough to share your story. ❤

    • Thank you so much for your thoughtful words of empathy and encouragement. It’s hard to explain, but I’m sure you know, there is such comfort in what you said. Thank you 🙂

  4. Hello! My name is Jenny and I’ve also been in your shoes. My 3.5 year old little girl was born with HLHS. I know how scary this diagnosis is, but I’m here to tell you, there is hope! Please see http://www.sistersbyheart.org and nominate yourself for a care package. We are a group of 10 “heart moms” who met and bonded over our HLHS children and have since decided to pay-it-forward into the CHD community by offering support and hope to others who are in the scary place we have all been. Keeping your family in our thoughts and prayers! ❤

    • Wow. Thank you so much! I will definitely check out your website and request a care package. What an awesome ministry for folks in our shoes. Thank you for your thoughtful prayers 🙂

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