Thursday, August 1, 2013

The terrible, horrible, no good, very bad day

It's been three weeks since our last fetal echocardiogram at Mott Children's.  Our spirits were  bouyed  by the impressive facility, amazing staff, and positive outlook.  We spent these last three weeks visiting with family and friends, shopping for the baby, and even having a baby shower, something I was very hesitant about.  I was finally feeling comfortable with the pregnancy and the diagnosis.

Then, on the 31st, we had our second fetal echocardiogram at Mott's.  Things did not go so well.  Heading to the appointment I felt ready for whatever news they had for us.  I felt like we had already run the gambit of emotions, from our devastating diagnosis in Italy to our more encouraging echo in Michigan.  I was sure I could emotionally handle anything.

The echocardiogram went as normal and afterwards we sat down with the head of the pediatric cardio department to discus the results.  Caroline's condition has gotten worse since the previous echo three weeks ago.  Her condition is evolving from aortic stenosis into hypoplastic left heart syndrome (HLHS), a much more serious defect.  In hypoplastic left heart syndrome the left ventricle doesn't develop properly and the baby is left with only the right side functioning.  A series of heart surgeries are required to essentially reconstruct the heart and make it functional.  The first surgery usually takes place within 7 to 10 days after birth.  Hypoplastic left heart syndrome if left untreated is a uniformly fatal condition.  The outlook for babies with HLHS improves as they get older and if the baby makes it to three years old their survival rate drastically increases.

This new information was extremely difficult to hear.  I thought I was ready for anything but I wasn't.  I guess I was just hoping that everything had stayed the same since the last appointment.  I held it together until about halfway through the consultation and then became a weepy mess.  Ryan on the other hand was awesome as always and asked all the right questions.

They also informed us that we are now candidates for fetal intervention.  The doctor told us that Boston has the most experience this procedure but that Mott's has done several as well.  The  procedure is high risk for the baby, but if it is successful will decrease her chance of developing hypoplastic left heart syndrome by half.  Without the fetal intervention she will almost certainly lose function on the left side of her heart.  Fetal intervention can only be performed within a certain window of time so if we opt for the procedure it will happen within the next two weeks.  Our file is being sent to the doctors in Boston to get their input on the situation.

We have been left with a lot to think about and some very large medical decisions to make.  Please keep us in your prayers.  All of your support so far has been incredibly helpful and it is reassuring to know that Caroline has so many wonderful people praying for her.  I am sorry if I have not gotten to responding to all of your comments and emails, I am working on it.  Please know that they are important to us and mean a lot.

We heard back from the doctors at Boston Children's.  They agree that we are excellent candidates for fetal intervention and see no reason why it cannot be performed at Mott Children's.  After much consideration we have decided to have the procedure done.  It will most likely be scheduled for August 12th.
Sweet Caroline


  1. praying for all three of you!

  2. August 12 is my grandmother's birthday - she is our great intercessor in Heaven and I will ask for her special prayers that day. She was a nurse and my grandfather was a doctor - from Michigan. They will be on your side. Still praying so hard from Texas. Lisa

  3. All three of you remain in our prayers! Let God guide the hands of the surgeons involved!
    Our Charlie should arrive in the next few weeks and will have the staged surgeries so never give up hope. He has a HLHS variant (very complicated and made the fetal intervention moot for us). But we are holding onto our faith and each other! Make sure you and Ryan do the same!

  4. Prayers for a skilled and delicate surgeon hand.

  5. You three and all your doctors and nurses are in our prayers! Love you!

  6. Ellen, I've been following your story through Ryan's facebook. I just wanted you to know how much you and your family are in our thoughts and prayers.

  7. Hi, I am friends with Mary and she sent me your blog link. My son was born with severe/critical aortic stenosis last July (not prenatally diagnosed) He had a balloon cath here in Phoenix and spent his first 3 weeks at PCH. We transferred his care to Children's In LA when it was determined he need open heart surgery to replace his defective valve. He had a Ross Procedure on August 16 of last year. He had a rough recovery but now is a happy, chubby, healthy 13 month old. He will need multiple surgeries in his life but for now, we are good. I have many resources for you when you are ready. But for now, I have hope and lots of prayers. HUGS!!!

  8. I'l keep praying for you all - especially on the surgery date!

  9. Praying for your daughter. My youngest son was diagnosed with HLHS 24hrs after he was born. Eddie has had the three scheduled open heart surgeries. He's defied the odds and he constantly amazes. He will be starting KINDERGARTEN in less then 20 days. There is hope!