Welcome to The BabyJesse Foundation! This site was created to raise awareness and collect donations for my son, Jesse, who has a rare liver disease called Biliary Atresia.

Jesse Alexander was born on Sept. 6, 2009. He wasn’t due until Oct. 9th, but with a difficult pregnancy and pre-term labor, he showed up earlier then expected. He weighed 7lbs 2oz and was 17 3/4 in. long with a full head of dark brown hair.

I fell in love with him right away and was relieved when I was told he was ‘perfectly’ healthy. What mother doesn’t want to hear those words? A few days later he developed the jaundice that I thought every baby got after birth. I put him in sunlight, nursed him more and he seemed to have cleared up a few days after that. Then, at around 5 or 6 weeks old, he started to look yellow again and had light, greenish stools and would scream and never sleep more than an hour at a time. I knew in my heart something was wrong, but I heard, “oh it’s colic, its normal for babies not to sleep, it’s normal to have green stools”, but I knew better. I kept bringing him to the doctor and we tried something for gas, we tried switching to formula for a weekend to see if it was my milk making him jaundiced, nothing worked.

Finally, the doctor ordered some labs to check his bilirubin and liver enzymes and instead of waiting a few hours for the results, he had me take Jesse’s blood directly from Quest to the Pottstown Hospital and we got the results withing 45 min. They were high, higher than normal. He was VERY concerned and when he got the results back he told James and I to come in to his office immediately (even though it was after hours), I knew something was terribly wrong. We arrived around 4pm and he told us he thought Jesse had a rare liver disease called Biliary Atresia and we needed to head to the hospital immediately. I was terrified, shaking, crying, didn’t know what this disease was, but we left, and headed straight to A.I. DuPont in Delaware. James-my husband-has a few family members who work there, so we felt very comfortable going there.

We arrived in the ER and they already knew we were coming. We checked in, and Jesse immediately had tests done, blood taken at just barely 8 weeks old. I was a mess that day and the rest of the week. I still didn’t understand what he had and what it really meant. I thought that this one surgery would cure him for good, but little did I know, this was going to be a life long journey, one that would test our faith and love and commitment as a family and as Christians.

We were told they couldn’t see a gall bladder on the scan, and they were definitely suspecting Biliary Atresia. They did a chest x-ray and found he also had a boot shaped heart. There are 4 markers you check for when your heart is shaped this way and thank the Lord, Jesse had NONE of them! That would have been another surgery and it would have been scary. We just have to keep on it once a year or so. I stayed at the hospital with Jesse from Monday night until after his surgery that next Thursday or so. They did let us go home the day before his surgery, which was a nice break. We cuddled all night long and I dreaded this surgery more than anything. I wanted the Kasai to work, so bile would drain and he wouldn’t be yellow anymore. I was scared for my little boy. We woke up around 4:45 am and got ready that friday morning to head back to the hospital. I didn’t want to take him back, I did not want to see my little boy be put out and have a 4 hour surgery. We headed there, He hadn’t had anything to drink since 4:45am and his surgery started around 10:30am or 11am. I was a wreck the entire time. All I could think was, “Is my sweet little baby okay?”

Every hour the nurse came out to update us. It was positive every time and before we knew it he was in the PICU recovering. We walked in there and all I could do was bawl my eyes out, seeing him hooked up to so many wires and tubes. I was scared for him. He was 2 months old, and he has already been through more than most people go through in a lifetime. They removed what was left of his gall bladder and the destroyed bile ducts and rerouted them to see if bile would start draining. Jesse’s surgeon, Dr. Stephen Dunn, was very hopeful that it would. Jesse was barely as yellow, and his eyes were starting to turn white again. I was hopeful as well, but little did we know, his bilirubin count would sky rocket once again… something we both dreaded and did not want to happen.

His levels dropped to 3 and the doc was pretty happy. He said below 2 Jesse would no longer be yellow. We were released about a week later and Jesse was happy. He developed normally and hit almost all of his milestones. He grew and gained weight, which was something we were worried might not happen. Jesse was on all kinds of medications, and I felt as though it was somehow my fault. The doctors tried different combinations of medications to see what would help the most, and it seemed like nothing was working.

They took him off of Actigall when his levels went up to 7 and a couple of weeks later they sky rocketed to 18! We were scared and had more blood work done and he was put back on Actigall and his levels started to come back down. Within a week it was down to 9 again. We then noticed he had fluid in his belly and we were admitted into the hospital from 2/26 -3/1/2010. He was given a diuretic and the fluid drained. His belly was small again, but his liver was still so big. About 3x it’s normal size.

On March 2nd, 2010 Jesse was officially put on the transplant list. It was a sad, but good day for us. It was so sad to think my little boy would be needing a transplant, because that is the only “cure” for this disease; but a good day because I know this will help him in years to come. But sad again because he will be on 1 or 2 medications for the rest of his life. Within the first year after the transplant Jesse will be on many different medications. I’m scared. He will most likely be having his transplant within the next 3-6 months. He is still so little, so I pray it’s an uneventful surgery. His disease is fast moving, and the benefits outweigh the risks at this point. I hope someone in the family can donate a piece of their liver, because I hear there are more benefits to him if done this way. It’s sad to think that some small child would have to lose their life in order to save my child.

Lord willing Jesse will receive his Liver transplant sometime within the summer for 2010. Updates will be posted on the site as more news rolls in.