Brooke Marie Wallace

Brooke was born on a Wednesday via an emergency c-section. My delivery is one that I will never forget! Thanks to God and Dr. Leonard, Brooke was born safe and what appeared to be healthy! While we were in the hospital everything was normal, just like my other two children. I did notice at first Brooke was a sleeper and I even got in trouble because she went 6 hours before she ate!  We were both discharged on Friday afternoon.

We had a follow-up appointment with her pediatrician on Monday.  I mentioned to the doctor that we were concerned about the eyes being jaundaced and was told that is normal for babies and it should go away in a couple of weeks.  We went back for our two week checkup and Brooke was having slow weight gain and was still jaundaced. Still nothing was done with the jaundaced, considered to be mild. I had mentioned to my doctor that she had a hard time latching onto the bottle and maybe she was "tonguetied" and that is why her weight gain was slow. I work for an otolarygngolist group, so I quickly went to see one of our doctors who said yes and went ahead and performed the frenuloplasty (tongue clip).  She gained 5 ounces in 5 days! It was said to have been the problem and was corrected! When she was a month old I still noticed her eyes and said look her eyes are still jaundaced...it is mild it is ok. 

Well, I am a mother and you are the doctor...OK.  I went to have lunch with my daughter and her nurse there was holding her. Later that day she was talking to my best friend who works with her and mentioned to her about the jaundace and that was not normal. Stacey, my best friend, said I know she has been back and forth to the pediatrician's office but they have not done anything. Mrs. Wolfrey, the school nurse, said she needs to make another appointment and ask for some lab work.  Stacey then contacted me that weekend, she told me about the conversation and said I really need to follow up.

 Monday morning, first thing, I called the pediatrician's office and they got me right in.  The doctor said yes she is still jaundaced I will go ahead and order a bili level.  Meantime, Dr. Richman comes in and sees Brooke and says oh yes she is still quite jaundaced and said we need to do more than just bili levels.  THANK GOODNESS, again for a GREAT doctor!

Dr. Richman then took over Brooke's care.  She received the labs back that day and called me at home with the information. She had already contacted the pediatric GI doctor at INOVA and consulted with him Brooke's situation.  He asked that an ultrasound be done along with some more labs. I was able to go on Wednesday for the ultraound. As I was leaving the hospital I received a call from Dr. Richman's office saying I needed to go straight to INOVA hospital! WOW, I had nothing with me, my husband was at work and I was a basket case.  I picked my husband up and we went straight to INOVA.

When we got there and admitted to the hospital, they immediatly took us for a procedure, the liver biopsy. INOVA hospital was AWESOME. The staff and doctors were great! Bo and I stayed there in the room with her for the two days. On Friday they came in and told us what their conclusion was...biliary atresia. They said it would be best if we went to Johns Hopkins for treatment.

So we left there at 9:00am Friday morning and went to Johns Hopkins. Another AWESOME staff, doctors and hospital! We arrived there by 11:00am. We met with Dr. Colombani, the surgeon and Dr. Schwarz, the pediatric GI. I did not realize this was a pre-op visit and we were going to have surgery on Monday! WOO-WEE what a whirlwind! They allowed us to go home for the weekend and prepare but had to be back at Johns Hopkins Monday morning.

The weekend went by quickly, we were at Johns Hopkins Monday morning for her surgery. She was going to have the Kasai procedure. This does not cure biliary atresia, it buys you time. Most of the time you will have to have a liver transplant.

This was the longest day of my life! My sister and brother-n-law were vacationing in Pennsylvania and came to be with us for the surgery. Thank goodness. We so needed them and thank them for being there for us! The surgery went well and she spent the night in PICU overnight and then on the floor for 8 days.

It has been almost 4 months since the Kasai and we are now in contact with Georgetown to start the transplant process. Why not Johns Hopkins you ask....the lovely ins and outs of insurance companies!!! We can see our doctors at Johns Hopkins and follow-up but as for the transplant, our insurance company will only allow it to be done at Georgetown. So now another road to go down in our journey!

Now that we are in contact and had our first appointment with Georgetown, let me say they were top notch! These people were the most amazing group of doctors, nurses and staff! I know we are in GREAT hands and God is with us. He opens doors and closes doors, I feel this was part of His plan and this is where he wants us to be for Brooke's transplant! I am very happy and pleased with Georgetown! 

 Fight for a cure!!!          Give the gift of Life!!