Our CHD Baby

I was sitting up nursing my baby last night and thinking about what to write today.  I realized that it is important for me to tell my oldest son’s story.

In February of 2012, I found out I was pregnant.  It wasn’t exactly expected but I really was excited.  We were currently living in the U.S. territory of Guam, where we were stationed and my choices for doctors were limited to any military doctor on the island.  Nothing about the pregnancy was bad. A little extra morning sickness suggested to me that we were having a boy.  I was so certain that we had him named before we even went to the anatomy ultrasound.

At the ultrasound we found out that he was, indeed, a boy and we were pretty excited.  The technician told me she saw a “shadow” on the ultrasound and couldn’t get a good picture of his heart and so we would probably get a call from our doctor requesting another ultrasound.  I didn’t even bat an eye- I know how a lot of these pregnancy scares go and didn’t want to let that bother me in the slightest.

This is the picture of a healthy heart given to me by the pediatric cardiologist that diagnosed my son.
This is the picture of a healthy heart given to me by the pediatric cardiologist that diagnosed my son.

The next day we were given a call and told that the doctors had all conferred over the ultrasound and were a little bit more worried. They requested that I complete all the blood work testing as well as come in for an amniocentesis and they would be scheduling another ultrasound for a few weeks out, when his heart was a bit bigger to get more information.  At that point I was slightly worried.  Extra testing was scary.

The blood work was quick and relatively pain free. The amniocentesis was scary.  They were very good and very professional. The doctor explained that they had seen a defect and needed to rule out several different genetic conditions for which we would need more help.  I was still fairly certain that this would all blow over but the doctor told me to expect to go to Hawaii to deliver, because of the chance of my son needing extra help at birth.

I went home and waited for the tests.  Blood work came back clean.  All of the amniocentesis tests came back clean.  The ultrasound was last and once it finally came back (I was about 30 weeks by this point, after getting the anatomy ultrasound done at 21 weeks), I was called in for a consultation with the doctor to explain the findings.

We were told then that he had a “very large hole in his heart” and the likelihood of having surgery right after birth was pretty high.  Suddenly, I was being told I had to leave for Hawaii within 10 days. The chance of preterm birth is much higher with kiddos who have a heart defect and they didn’t want me anywhere near Guam when he was born.

So, with high anxiety, I called my friends in Hawaii, packed up my suitcase and took my two youngest daughters with me to Hawaii.  My husband had to stay on the island to work and I found babysitting for my oldest.  The night before I left all my friends threw me a birthday party/baby shower and I parted ways with them saying I would see them all in a few months.

Once in Hawaii I went to two ultrasounds in one day.  The first ultrasound was with a doctor who cared for pregnant women. That doctor outright said “Don’t plan on delivering here, we can’t deal with this heart defect”.  That was the first wrench that was thrown into the situation.  The second ultrasound was with a pediatric cardiologist. That ultrasound was so long I fell asleep on the table!  Once he was done he told me to get my husband up to Hawaii immediately…we had to make some plans.

This is the drawing done by the pediatric cardiologist. I've since learned that it is not 100% accurate, but I keep it because it really helped me understand what was happening to my son.
This is the drawing done by the pediatric cardiologist. I’ve since learned that it is not 100% accurate, but I keep it because it really helped me understand what was happening to my son.

Again, they rushed me out of Hawaii.  The chance of preterm delivery scared them and I had to be  off the island by 34 weeks.  This time they rushed us up to Seattle. My husband took the girls home to Guam and I went on alone.  That was the loneliest 4 weeks ever.  Doctors finally explained that my son has a Double Inlet Left Ventricle, with an ASD, VSD, hypoplastic mitral valve and a hypoplastic right heart.  He would have to have surgery within the first few days of life and would end up having to have several more throughout his life- ultimately getting a pace maker or a complete transplant as a teen or young adult.  I was also informed that I would never be going back to Guam. We would be moved off the island and stationed somewhere else.  Not having closure with my friends and home in Guam was very hard.

In all of this, I wasn’t so much worried for the baby inside of me… I knew that when he was inside of me he was perfectly okay and I didn’t need to worry about him. But I was worried for my girls and my husband.  Our entire family was being put through a huge trial with me being gone and I missed them all a lot.

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