A few weeks ago I received an e-mail from Debbie, a DC area mom of twin boys with a story that needs to be shared! Debbie is going to join us here on Balancing Today over the coming weeks to share Jacobs story, her own experience as a mom of a special needs child, and to talk about the personal battles she faces as a mom. I only know Debbie through e-mail, but I know her voice will reach millions of moms and I hope you all can help her to find a miracle for Jacob!
“When Matthew and Jacob were delivered, after a strenuous and extremely high-risk momo pregnancy that landed me on bedrest for 7 weeks and inpatient in the hospital for another 6 weeks during which the twins were given a 50% chance of survival, I remember breathing sighs of relief that they had made it out alive. My husband and I vowed that the journey we had been on had made us stronger and that whatever life threw at our family, we would face it head on because we were so lucky just to have our twins in our lives. God had brought us two babies who had surpassed the odds and made us believe in miracles. Now, we are holding tight to our faith as we await another miracle, a miracle for Jacob.
Since three days of life, something has been unusual about Jacob’s liver. His bilirubin levels skyrocketed and did not respond to phototherapy like his brother’s levels. The boys were both in the NICU and the doctors there started throwing out terms like jaundice, indirect bilirubin, GGT values, and urging us to consult a specialist. We did seek out a specialist, which led to several more, and now a year later, Jacob has been seen by countless specialists at 3 different hospitals, and the puzzle remains as to why Jacob’s liver is failing. Poor little Jacob has had his blood drawn more times than I can count, on average 3 times a week, every week of his life. He’s been in the hospital 10 times, including right now, where he’s admitted at Georgetown University Hospital and has been for over a week. We’ve run test after test on his blood, on his sweat, on his urine, on his stool, and on his liver through a biopsy. He’s had MRIs, CT scans, ultrasounds, HIDA scans, and echocardiograms. What I’m learning about medicine is that sometimes the test results don’t give you a clear picture as to what is going on, and diagnosis is as much an art as it is a science. You see, even with a healthy identical twin to compare Jacob’s results to, his results have puzzled all the specialists who try to help diagnose him. They’ve been able to rule out many diseases, but we do not have a firm understanding of why Jacob’s liver has failed. What we do know is that Jacob has something called cholestasis, and now cirrhosis and end-stage liver disease. He needs a liver transplant, and soon, in order to survive.
Yesterday marked 5 months listed and waiting on his miracle. In January, Jacob’s transplant team at Georgetown gave us some of the hardest news we have heard since beginning this journey: due to Jacob’s anatomy, the surgeons would not be able to accept a “split” organ for him which means we need a liver from someone his size who passes away. It’s heartbreaking on so many levels. Jacob’s team at Georgetown encouraged us to get Jacob multi-listed at another transplant hospital in a different region to increase his chances. The closest region with shorter average wait times, a great reputation for pediatric liver transplant, and driveable distance within 8 hours leads us to Cincinnati. We took Jacob there for an evaluation in March. After another visit in April, and a bit of time due to an insurance hang-up, he was finally added to their transplant list at the end of April. If he has the surgery there, it will take a monumental effort.
We’re waiting on a phone call that a liver is available, from either Georgetown or Cincinnati. We had the call once before, on March 8, and went to the hospital and waited for over 24 hours before finding out it was not a match after all. You could see the devastation on all of our faces, except on Jacob’s. One silver lining through all of this is that Jacob doesn’t know the battle he’s fighting. He doesn’t know what it feels like to be healthy. He continues to smile no matter what comes his way. He’s an innocent baby, and he doesn’t deserve any of this. We are praying for a miracle for him so that he can see his next birthday, so that he can grow up with his brother, the brother he’s known since the moment they split into two.
Please consider visiting miracleforjacob.com and making a tax-deductible donation in honor of our son. And register yourself to become an organ donor today. Our family is able to use donations to offset Jacob’s medical expenses and the cost of traveling back and forth to Cincinnati. You can be a miracle maker!” – Debbie