This is the day we had our level two ultrasound and found out that our daughter had “an under-developed left side of the heart”. Our lives changed instantly.
As many hypoplastic left heart syndrome (HLHS) stories go, we had our anatomy scan and everything looked normal but our tech couldn’t get a “good” view of the heart. We found out we are having a girl and everything looked normal even though she couldn’t see the heart very well. The tech joked that our daughter was a stubborn one and made me get up and walk around. This didn’t change anything. The tech told us that she wasn’t worried but she wanted us to come back so she could have a better look. We made our appointment for two weeks later and headed off to Germany
The Monday morning after we got back from Germany we headed back to our OB office to have a follow-up scan. Our regular ultrasound tech was out since she just had shoulder surgery so we had a new lady. She also couldn’t get a good view of our little girl’s heart. She also made me get up and walk around. When I got back my OB was in the room. This was a first and of course, made us worry instantly. Our OB agreed with the tech that there wasn’t a “good” view of the heart and ordered a level two ultrasound at our nearby hospital. She also asked for an echocardiogram, which she told us was to get a good view of the heart.
It took forever to get the appointment scheduled but after the tech talked to the hospital, we got our appointment scheduled for November 15 (the next day) in the afternoon. I was nervous but not overly concerned.
I talked to one of my sisters to calm some of my fears, as I often had during my first pregnancy, and was convinced that this was just a precaution. The tech was new and couldn’t get a good view so she called my OB in to prove she couldn’t get a good view. My OB merely agreed. Well, there was a reason that they couldn’t get a “good” view of our little girl’s heart. It is underdeveloped on the left side.
My husband and I both drove to the hospital directly from work. We were both nervous but had no idea how much our world was about to change.
The tech started on our level two ultrasound and measured everything. She kept noting how everything was measuring normal. When she moved to the heart, she also had me get up and walk around because our little girl was not in a good position. I was all too familiar with this. Once she had a good view, she was no longer telling us how everything looked normal. She was taking her measurements and was very quiet. My husband asked how everything look and she said that one side was measuring smaller than the other, which is not normal. I shot my husband a concerned look and the tech told us that a doctor would review all of the shots she took and then come in to talk to us. My husband asked a few more questions and I just wanted the doctor to come in to explain this all to us. I was scared and confused.
The doctor came in and did some measurements of his own. He had me sit up and then began to explain how a normal heart functions. We had anatomy, cut to the chase already! He then moved on to how a baby’s heart in the womb functions differently. FINALLY, he explained that our little girl’s heart was underdeveloped on the left side. He threw out some terms and I was probably in too much shock to take any of them in. I was crying and couldn’t believe what I was hearing. What did this mean for our little girl? Was she going to be okay? Our world was spinning.
After answering a few questions that my husband could piece together, they brought us to what we figured was the bad news room. We tried to gather ourselves a bit and put together some questions. When the doctor came in, he answered all of the questions that he could for us. He let us know that our baby would have to undergo a series of surgeries and that they couldn’t do the surgeries at this hospital. So we would have to deliver at one of the area hospitals that could do the surgeries for us. Then he told us we would have some sort of meeting with a bunch of doctors, a genetics counselor and a social worker. He said it probably wouldn’t happen until the end of the week. We would be able to get more information at this.
When we got home, we shared the news with our nanny. Her son had had open heart surgery as an infant, so she assured us that there was a lot that we could do for our little girl and she would be here for us. What are the odds that she would be in our life at this moment having been through all that she has? We have loved having her in our lives since the moment we met her and now even more so! Her encouragement and unwaivering support means so much to us and we are so blessed to have her in our lives. At that moment, it was really all we wanted to hear – our little girl was going to be okay. It isn’t a promise that anyone can make but we decided that we are going to stay positive and we are going to do everything we can to make her okay.
That night was really hard for us. We were playing with our older daughter after dinner and I just bursted out crying. Our older daughter came over to me and looked really concerned. I knew I was scaring her. I don’t think she has ever seen me cry other than perhaps a few tears of joy. I am sure it was frightening. I never like to see my mom cry. So I had to pull myself together.
We did research online and talked to our family and my bff who all provided a ton of support. It was at that point we found that an “under-developed left side of the heart” is HLHS and the University of Michigan
When we went to bed last night, we were exhausted and still shocked and confused.
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