Kelly’s Story

Site created on February 18, 2019

In September we found out we're expecting baby number 2; it was a welcomed surprise, but definitely took some time to sink in that we would soon have two kids.  At my second appointment I got some news that my blood work had come back high risk for a serious chromosomal disorder so we met with a genetic counselor and then had an ultrasound which showed some additional markers including a possible heart problem that increased the risk.  Therefore the doctor did a CVS, pulling cells from the placenta to test.  We were convinced that the test would come back positive and would have to make one of the hardest decisions of our lives, as babies with this disorder would not survive.  Flash forward through one of the worst weeks, I got a call that the results were all normal!  Shocked and elated I still had a tiny thought in the back of my head that something was wrong with the baby's heart so I requested another scan be done as soon as they'd be able to see better.  That scan happened last Friday and confirmed that tiny thought I had; it appeared one of the chambers of the baby's heart had not formed.  Crushed for the second time in a month we were referred to CHOP to get more detailed testing and a firm diagnosis.  After an hour long ultrasound we met with a cardiologist who informed us that the baby has Hypoplastic Left Heart Syndrome (HLHS) which means that his left ventricle is under formed or in this case not formed at all.  From there the doctor went over the surgeries they perform to help the baby's heart function in the way it should.    He'll require his first surgery within the first few days of birth, the second at 4-6 months and the third around 1-3 years.  We know this will be the hardest thing we've ever gone through and there are no guarantees, but this can give him a chance at life.

Newest Update

Journal entry by Kelly Reale

One week post-OP and we're out of here!  We got home late Monday night.  Hopefully life can settle down a little now until the next (and hopefully last 🤞) surgery.  If everything goes according to plan that will be in 2-3 years, but we'll take everything day by day.  We're so thankful that everything has gone well so far.  Thank you all for your love and support! ❤
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