Our patients' stories: Caitlin's new liver

By Shawnna Downey

Caitlin holds a photo of Jeff, the deceased donor who saved her life

When I was pregnant with Caitlin, I was confident I knew what to expect. After all, this was my third pregnancy, how much different could it be? But during Caitlin’s delivery I was running a fever, and as a cautionary measure the doctors took some blood from Caitlin and I to make sure everything was OK. I was fine, but the blood work showed that Caitlin was up against a lot more than a fever; her blood platelets were very low and her liver was barely functioning. She was only a few hours old but she had already started to turn yellow from jaundice. It was serious and the doctors wasted no time in rushing her to Boston Children’s Hospital.

Under the guidance of Dr. Steven Fishman, specialists from Boston Children’s Vascular Anomalies Center quickly diagnosed Caitlin with a hepatic hemangioma. That means a benign tumor—made up of a mass of blood vessels—had grown in her liver. These foreign blood vessels were intercepting all the blood intended for her liver, and at the same time sending too much blood to her heart and lungs. By the time she was born she had hypertension (high blood pressure), breathing difficulties and a liver that was barely functioning.

Doctors usually treat hemangiomas by giving patients a special steroid, delivered through an IV, which attacks and shrinks the tumor. But no matter how powerful a steroid the doctors gave Caitlin, the tumor refused to get smaller.

When it became clear the steroids weren’t going to work, Dr. Ahmad Alomari, an interventional radiologist at Boston Children’s and co-director of its Vascular Anomalies Center, devised a very innovative surgery to properly redirect her blood flow. The 12-hour surgery was performed successfully, but at that point her liver was functioning at less than one percent and was already too damaged to accept the rerouted blood flow. As she got sicker her abdomen swelled with fluid, to the point where her mid section was so heavy with retention she could barely breathe.  Before she could be well enough to be added to the organ transplant list Heung Bae Kim, MD, had to drain over four liters of fluid from her abdomen.

Finally, just a few days shy of turning five months old, we got the call that Caitlin’s new liver had been found. It was a very bittersweet moment. One hand, we were relieved that Caitlin would be able to have a new shot at life, but it was never far from our minds that her second chance came from someone else’s loss. To this day it is something that I struggle with at times.

After ten hours Caitlin’s surgery was complete. Her recovery was slow, because she was so young and sick, but every day she got a little stronger, and now she’s doing well.

Since Caitlin’s surgery we’ve become close with the family who’s decision to donate their son’s organs saved our daughter. Their selflessness during tragedy gave Caitlin a shot at life and I’ll be forever grateful to them for that. Over the years our families have worked together to raise awareness about the importance of organ donation, and have formed a tight bond. As Caitlin grows up, I’m sure she’ll join us in our awareness-raising efforts and grow to appreciate the bond that connects our families as much as I do.