A broken heart

We spent most of Friday afternoon at a heart clinic near LDS Hospital in Salt Lake. Previous tests indicated that Stephanie has a small hole in her heart between the right and left ventricle. This afternoon was spent testing the hole's severity and focusing on identifying the right treatment.

During normal fetal development, this same hole allows the fetal blood to circulate through the placenta to the mother to receive oxygen. Before birth, 2 sections of the wall grow towards each other. After birth, these sections seal and the connection is closed. However for 20% of infants, the connection remains open. Stephanie is a part of this statistic.


Two tests were conducted today: 1) Transcranial Doppler (TCD) and 2) an ultrasound of the throat. The throat ultrasound indicated normalcy. However, the TCD showed that during rest Stephanie has a shunt rating of 1. During intense activities, she has a rating of 5 - indicating a large hole.

We were educated on several treatment options. These include: no treatment, medical therapy with blood thinners, open heart surgery (now only done for severe cases) and catheter-based PFO closure. At this point, we are leaning towards the last option - catheter-based PFO closure.

What does this entail? A double umbrella or double disk device is inserted through a catheter from a large vein in the leg. These devices are collapsible and can be ballooned across the PFO defect. This technique is fairly new, having been developed in the year 2000. However, over the past 7 years, they have been found to be very effective.

For more details, refer to the following web reference (http://www.clevelandclinic.org/heartcenter/pub/guide/disease/congenital/pfo.htm).

It takes 3-6 months for the inner linning of the heart to grow a layer of tissue around the fabric of the device. Religious taking of blood thinners is critical during this time frame to prevent clots from forming.

Following the surgery, Stephanie should be back on her feet in 2-3 days. Lifting restrictions will be in place for 30 days (< 10 lbs for 1 week, < 50 lbs for 1 month). While we are a little overwhelmed about another surgery, we are also relieved in knowing that we finally have a diagnosis that includes specific answers and next steps. For months, we have been in the dark, not knowing the cause. It will be a relief to no longer have the facial numbness, headaches and lack of balance.

We meet with the surgeon on Monday morning to learn more. Sorry for the lengthy essay, but we wanted to share more information since many of you have been asking. We will keep you updated.