Ava Renee Gabler
January 26, 2004 at 12:39 p.m.
7 lbs. 4 ozs.
19 1/2 inches long
Ava was born in Austin, Texas at Seton Medical Center. The birth was quick, everything appeared to be fine
and there was no indication of any problems during the pregnancy. Daddy went with Ava to the nursery where she was accessed,
cleaned and bundled up to be released to our recovery room. One of the nurses noticed she was a little blue around the lips
and nose, after checking they found that her oxygen saturation level was a little bit low so they wanted to monitor her. Eventually
her oxygen level improved and we were relieved. However, the following day we were told that a blood test had revealed
that her bilirubin level was higher than normal and they wanted to take a second blood test. Like a lot of people, this was
the first time we had heard the word bilirubin, but we all now know how that word rules your life.
The second blood test revealed a slightly lower number but still elevated and the neonatologist said that
they had contacted a GI and they were going to do an ultrasound on her belly. We weren't sure what to think, we had no idea
what was in store. We went with Ava during the ultrasound and remember them talking about the gall bladder. It
turns out, of course, they couldn't find it. Since Ava had eaten prior to the ultrasound, they waited awhile and performed
another ultrasound just in case her stomach was blocking it. That was the second day of her life and we still had no grasp
of the seriousness of what was happening.
The following morning, a heart murmur was detected on Ava and an electrocardiogram was performed. That
afternoon was when we were bombarded with the possibility that Ava had biliary atresia. However, they still held
out hope because she had a cyst near the liver and they thought that maybe that was the problem. At the same time the GI was
talking to us about our possible scenarios, the neonatologist walks in and says that Ava has a problem with her aorta and
she will be taken to the NICU. It turns out that she had a narrow spot on the aorta and the condition is called coarctation
of the aorta.
We spent several days in NICU and then transferred to Children's Hospital of Austin to await surgery to
correct the aorta. In the meantime, further blood tests, ultrasounds and HIDA scans fail to convincingly diagnose biliary
atresia. Therefore, after her heart surgery and recovery, exploratory surgery takes place to definitively diagnose the
bilirubin problem. This was done at three weeks and we learned that it was indeed biliary atresia; Ava was also found to have
malrotation of the intestines. The Kasai was performed and her intestines were adjusted.
We thank God that it was caught so quickly, in the hospital, and hope that it will work in our favor. Ava
is on 6 different medicines, for the time being, but hopefully a couple of them will be gone soon. During all of this
we were lucky to have heard about a seminar in Houston given by the Texas Children's Hospital. We went on Feb 22nd and met
other families and listened to the team from TCH talk about the latest information concerning biliary atresia. The seminar
was informative and scary; we learned just how rare this disease is. Someone at the seminar told us about the C.L.A.S.S.
website and we are glad we found out about it.
Ava still has a long road ahead of her, but with God's help the hope is that she will come out of this
with the best possible outcome.
Anna, Jeff and
big brother Nicholas
