Kate's Diagnosis

March 19, 2012 - probably the worst day in our lives.  We went for a Level 2 ultrasound to get a closer look at our baby girl's heart since the last 2 ultrasounds were unsuccessful in seeing a 4 chambered heart.  We were told that she had a heart defect called Hypoplastic Left Heart Syndrome.  It is a very rare congenital heart defect, and we don't know the cause, but it basically means that she only has 1/2 of a functioning heart. Her left side is very underdeveloped and cannot pump blood to her body. She is fine while she is inside my belly b/c I do all of the work, but once she is born, she will need a series of 3 surgeries to make her heart function as best as it can.

She will never have a normal functioning heart, but with successful completion of the 3 surgeries, we are hopeful that she should be able to lead a mostly normal life. She won't be running any marathons or playing competitive sports, but she should be able to run and play like any other kid. The doctor said that there is 95% survival rate with successful completion of the surgeries.

The 1st surgery will occur within 1 week of birth. I will be delivering via c-section at Mercy Hospital St. Louis probably sometime between 6/18-6/27 depending on her size. She will be having her surgery either at St. Louis Children's or Cardinal Glennon Hospital. We will know more once we meet with the surgeon about 4 weeks.   This surgery is the highest risk since she will be so little.  The 2nd surgery will occur around 3-6 months after birth.  The 3rd surgery will occur around 2-3 years old. 

 

They have made great medical advances in these heart surgeries, so we are very hopeful for a positive outcome. This will be a lifelong challenge for our family, as there can be many complications and the need for additional surgeries. 

 

I will continue to have lots of ultrasounds to watch her heart and her growth. She looks to be perfectly healthy otherwise.

 

It has been really tough for us, but we want to be as normal as possible for Jacob. Our focus for now is just getting her out as plump and healthy as possible. We've decided to share her name so everyone can pray for her. Her name is Kate Elizabeth:)