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.

4 thoughts on “Finding Out

  1. Christi,
    This breaks my heart and warms it at the same time. I know that you will be able to handle whatever comes your way. You are a strong MaMa and you have a wonderful family, plus a whole state and more pulling for Poppy! We don’t know what her future will hold, she has touch so many people already, and so many have come together to Pray for her. We will be praying for you and your family everyday and every time you cross our minds through-out the day. Thank you for sharing your story, not everyone would be so open and honest about the struggles they are going through. Everything happens for a reason. Lean on your friends, and squeeze your family extra tight, and know that everything will be alright!

    Hugs to you and your family!

  2. I understand almost exactly what you are going through. My first born son was one pound six ounces and I delivered at the UW only 24 weeks along. I adore the name Poppy and I am so hopeful for your little one’s future! Your story has touched so many people.

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