By Tara Hahs
Mommy to Haleigh
Congenital Diaphragmatic Hernia and Bilateral Wilms Tumors
Haleigh was diagnosed with Congenital Diaphragmatic Hernia while I was pregnant at my 18-week scan. It was really emotional to get that news: A year before we lost a little boy to miscarriage at 17 weeks, only to be told there was a 50% chance of losing her as well.
I was scheduled for inducing at 40 weeks to make sure her team was there for immediate NICU care. But Haleigh came a day before, on July 14, 2019. The moment she was born, she was immediately taken for intubation, we got five minutes with her, and then she was transferred from the delivering hospital to Cardinal Glennon NICU.
To go through a whole pregnancy getting attached, for your baby to then be ripped away before even spending a moment with her broke my heart. It was a few hours before we actually got time with her; she was in a medical bed already on a ventilator. We had no bonding time at delivery, but we were able to speak with her and touch her hand and let her know we were going to be there with her every step of the way.
Within 24 hours, she was placed on ECMO. Haleigh received her CDH repair at three days old, spent three months recovering in the hospital and finally got to come home.
But things took a turn on her 6-month birthday when she was diagnosed with Wilms tumors. The pulmonologist team noticed her left lung seemed to be holding air in her X-ray so they ordered a CT to see if anything would be causing it. Luckily the person doing the scan went a little low in the scan area and caught the top a tumor in one of her kidneys, so they changed the scan from lung scan to a full body scan and found four tumors total (two in each kidney). A chromosomal deletion was discovered in Haleigh’s DNA that leads to Wilms.
They started chemo immediately. After four weeks of chemo, she got worse so they did another scan and found the tumor in her right kidney had doubled in size, so they removed her first kidney at seven months old. A few weeks later they wanted us to approve a tracheotomy because she was still not improving. But before I put her through another surgery, I requested another CT scan. If the tumor was reacting to the chemo, I would sign off for a trache to give her time for the chemo to work more, because they were hopeful that the chemo would shrink the tumors enough to remove the tumor and save enough of the kidney. But, unfortunately, the CT revealed that the tumors in her left kidney had again doubled. So her left kidney was removed at 8 months old, and she’s been on dialysis since March 17, 2020. It’s challenging for her is having to be stuck in a hospital bed for five hours, three days a week for dialysis treatment.
As of January 19, 2023, Haleigh on the transplant list for a kidney. We had to wait for two years after chemotherapy and her last scan had to be clean to be cleared for listing. Listing required multiple labs, scans for sizing and heart echos. Now we wait for a donor to match her sizing requirements.
The last child her age on the kidney transplant list only waited six months. Due to her lung sizing because of CDH, they are requesting a smaller kidney to prevent it from pushing up on her diaphragm to push into lung space. Specifically we are looking for potential donors that:
- are between 5’4″ and 5’6″ in height and around 120 lbs in order to have the appropriate sized kidney for Haleigh (8-10cm) — a CT scan will be required to confirm size
- have no history of high blood pressure, kidney stones, cancer or diabetes
- BMI below 35
- must be a non-smoker
- must have their own health insurance
- are blood type O
- have had a physical with their primary physician within the last year
We love Haleigh’s fight, her sass and, most of all, her happiness. She’s always smiling! She has grown into an amazing little girl! She continues to show the world who is boss and that she will win this fight! We long for her transplant and recovery, so that she can finally be an active toddler. Make-A-Wish provided a camper so we can do what we love and take camping trips as a family this summer. And, once she recovers from transplant, we’ve promised her big brother a trip to Disney to celebrate. So many things to look forward to!
