Chinazah Enemouh was airlifted to the Pediatric Intensive Care Unit at UCSF Benioff Children's Hospital with a failing heart. Diagnosed with pulmonary hypertension and a severe respiratory infection, she received aggressive and specialized care and eventually stabilized. Her mother, Chioma, reflects on her daughter's frightening illness and recovery.
How did you learn something was wrong?
Considering her previous history — she was a preemie born at 1 pound — she was doing remarkably well. But I came home from work one day and she was breathing kind of fast. I initially thought she had just exerted herself, but I tried to pace myself with her breathing, and all I could think was, there's no way I could breathe that fast unless I was running uphill. I knew something was wrong.
Due to her previous history, we have a few medical gadgets at home, so I checked her oxygen level. It was in the 70s, which is pretty abnormal. At that point, we took her to the emergency room, but the first facility we got to wouldn't touch her, knowing her history — a 27-weeker born at 1 pound. They immediately shipped us out to a different facility, where she was admitted.
I kept asking the doctors, "Can we test her and see what's going on?" I felt in my heart that something was wrong. But all the doctors said, "It's likely, because she's a preemie, that she is suffering from RSV [respiratory syncytial virus]. Just give it a couple of days. She should get worse and then get better."
But every day she just got worse and needed a little bit more oxygen. So I approached the doctor and mentioned that I don't think this is RSV, or if it is RSV, it has progressed to something else, and that she needed to be seen by a cardiologist or a pulmonologist. The doctor initially resisted, but I put my foot down and said, "I understand I'm being called a crazy mom, let it be that I am a crazy mom, but just do this and then you can continue on thinking whatever you normally think. But I honestly think there's something else going on."
I was going to work when the cardiologist came by to see her. By the time I got to work — I wasn't even there for thirty minutes — they called and said her heart was in failure and they needed to airlift her out to UCSF immediately, and they were not sure if she's going to make it all the way over there.
After a lot of diagnostics at UCSF Benioff, we were told that she has pulmonary hypertension. I didn't know much about the condition at the time, so I started doing some research and, honestly, everything out there regarding this condition is very grim. But for some reason, I had a lot of faith in the professionals and the doctors that I met at UCSF. After my daughter had been here for a few days, I started to get my bearings in terms of the difference between the facility that my daughter was at before and UCSF Benioff Children's Hospital. There was a huge gap in terms of the care and the overall level of confidence that the doctors gave us.
Tell us about the doctors who treated Chinazah.
The main doctors we dealt with were Dr. Fineman and Dr. Robertson — that we still deal with, because we have to come and check in with them every few months. I didn't feel like I had to go through hoops to get to them. They were completely accessible — I have their contact information at my fingertips. Any time I had a concern, they addressed it.
The first we heard of Dr. Fineman, he was communicating with the ICU doctor at the facility prior to our daughter getting airlifted to UCSF Benioff. Dr. Fineman wanted certain medications to be given to Chinazah before she was transported to UCSF, and my husband initially resisted a lot of the treatment. He said, "No, been there, done that. It didn't work before. What makes him think it's going to work now?"
But I said, "This is a different facility, a different doctor." And I could see from a lot of the people at the facility that we were at, that they had confidence [in UCSF]. So we went ahead with it, and immediately her stats jumped to 100 percent for the first time in almost a week, which was almost miraculous to watch.
Once we got to the hospital, I understood that Dr. Fineman was supposed to be at home but had come in just to see us. He was very down to earth. He sat with me for a while and we went over my daughter's history. She was going through a lot of diagnostics at that point, so he didn't really have a lot of answers. He just told us that she's getting the best care and we're going to get to the bottom of it.
How did Chinazah recover?
The condition that she has is basically like her heart is pumping against a wall and not allowing any blood to go through her lungs. When she arrived, her heart was almost giving out. They used a lot of life support-type machines to support her, and she stabilized.
It took a while, because she probably picked up an infection before she got here. But she finally decided that she would turn around and she did. At the time I did not have much hope, but the support that was given to her was so aggressive that she just finally stabilized and was able to get better, despite all the odds.
Interviewed April 2012