COTA for Team Jacob B

Our Story

We found out at my 20-week ultrasound that Jacob had a rare birth defect that was causing bladder abnormalities and kidney damage. At that appointment, we were given the option to terminate the pregnancy. We decided against it and instead lined up all the specialists we would need when he was born – a urologist, nephrologist, cardiologist – all the while having no idea what his birth would bring. When Jacob was born via emergency c-section at 37 weeks, he was immediately taken to the NICU. When he was 2 days old, he had surgery to remove the blockage in his bladder. To say we had never been so terrified in our lives is an understatement.

That first year, there were many doctor appointments, blood draws, ultrasounds, and testing. Jacob was diagnosed with chronic kidney disease and his kidney function was around 70%. Jacob had another surgery at 1 year old, and for the next 3 years he was thriving and his health was stable.

However, at age 4, his kidney function began to decline. Over the course of the next 3 years, he had numerous procedures, testing and surgeries, in addition to the frequent doctor visits and blood draws and ultrasounds. Most, if not all, of the procedures and hospital visits were very traumatic for Jacob, but his easy-going personality always shined through, and he would always bounce back to his charismatic self quite quickly.

After a particularly difficult procedure and subsequent complications in June of 2022, his urologist concluded that his bladder was not the cause of his declining kidney function. The team concluded that his kidneys were not keeping up with his growth and that was why his function was declining. Talks of kidney transplant were in our future. We were told to “wait and see” if his kidney function could keep up with his growth during puberty. Jacob’s kidney function had continued to decline and was at 25%.

In November of 2023, we felt like were on a downward spiral with Jacob’s health and were out of options. But I couldn’t help but to feel like there had to be something we could do for his bladder and slow the progression of his kidney disease.

I decided to post about Jacob in a Facebook group for his particular birth defect and asked if anyone in the group had tried anything out of the ordinary or had tried anything else that helped their kiddos, as we felt we had exhausted all of our options. A mom told me about a doctor in Texas whom, as she put it, “saved her son’s life.” This urologist had seen thousands of boys with complex bladder and kidney issues and parents from all over the world take their sons to see him.

We took a leap of hope and put our trust in this urologist last year, and we are so happy we did. We flew out to Texas four separate times for a series of procedures and surgeries, the most intense being ureter reimplantation and a Mitrofanoff (this is where the surgeon removed Jacob’s appendix and attached it to his abdominal wall to serve as a conduit for catheterization). It was an excruciatingly tough nine months, but we survived. And my husband and I were in pure awe of Jacob’s resilience! As he was still recovering from extensive bladder surgery, we actually had to evacuate for Hurricane Milton! 😵‍💫

Jacob’s kidney function finally stopped declining and stayed at around 20% for the next 9 months. We finally felt like we could breathe again. Jacob’s bladder was finally managed and was no longer causing additional damage to his kidneys.

However, in June of this year, his labs showed that his kidney function was again declining. We were told by his specialists to expect a decline during a growth spurt as he nears puberty. So…here we are at 15% kidney function and are starting the transplant evaluation process. The positive news is that Jacob’s amazing urologist managed his bladder, and it is in “great shape” for transplant.

After researching transplant centers and discussing our options with the nephrologist and urologist, we decided on UPMC Children’s Hospital in Pittsburgh. This is a top-notch center, and we feel that they can best meet Jacob’s medical needs. Another deciding factor was that we would be close to our family and friends in and around the Pittsburgh area, as we will be required to stay in the area a month or two post-transplant and will definitely lean on them!

Which brings us to now… Monday we will be flying to Pittsburgh for the transplant evaluation. Jacob will have two days of testing, and Steve will have three days of testing to determine if he is a match for Jacob and can donate his kidney. It is going to be a pretty intense five days for us, but we hope to have a little bit of fun too if we are not too exhausted!

Jacob is a pro at blood draws, ultrasounds, and EKGs… What’s going to be “so boring” for him is meeting with all the transplant team members. Like always, Jacob is taking it all in stride. When I asked him if he had any questions, his first question was, “will there be any snow? I want to see snow!” 😀

So, we don’t know exactly when the transplant will happen, but we are speculating probably within a month or two after the evaluation. And since we will be traveling and missing a significant amount of work, plus all the related expenses of an actual kidney transplant, it goes without saying that we could use a little help! That is why we partnered with COTA – because all of this is pretty overwhelming, and not having to worry about transplant-related expenses would be a tremendous weight lifted from us.

That’s Jacob’s story, and I tried to make it succinct, but it’s hard to do that. It has been a literal emotional roller coaster since we found out about his birth defect, and even though he’s had countless blood draws, my heart still races when I get the notification on my phone that a new test result is in. We are focused on getting Jacob the kidney he needs and staying strong for him. We have had an amazing group of supportive family, friends, and even strangers who have been invaluable to us on this journey so far. Thank you! 🙏🏻

We will update every step of the way!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.