Our Story

Oakley’s medical journey started at 22 weeks pregnant. After a series of unlikely events, our OB noticed some abnormalities on an ultrasound. We were referred to a high-risk pregnancy specialist where we were given the news that Oakley had a very real chance that he may not make it after birth. From what they could tell from the ultrasounds it appeared that he had a blockage in his urinary tract. This blockage was causing amniotic fluid to get backed up in his system. The pressure was wreaking havoc to his kidneys, ureters, and bladder. It was also causing inadequate lung growth.

Oakley was born June 13, 2021, at C.S. Mott Children’s Hospital in Ann Arbor. He came out crying but faded very quickly. He was immediately put on intensive respiratory support, but after 14 hours we were told his lungs were too underdeveloped and damaged. At less than a day old, Oakley had his first surgery to put him on a type of life support called ECMO (eck-moh). ECMO is a system that does all of the work that the heart and lungs are supposed to do, giving them a chance to relax and allow his body to hopefully repair them on their own. ECMO works by cycling out all of his blood, oxygenating it, and then cycling it back into his body. This process has many risks to it, including clotting. A large clot was found 12 hours after the initial surgery, causing the surgery to be performed again to remove the clot in the ECMO machine which was threatening to enter Oakley’s body. We later found out that it was likely during this time that Oakley suffered a stroke which damaged the right side of his brain. Oakley was on ECMO for a total of 4 days and then surprised everyone by already being able to go back on a respirator. It worked. We, and he, could breathe a little easier.

Oakley was in the NICU for 65 days where he made amazingly fast progress. Over time he weaned off the respirator and was able to breathe on his own. He underwent several surgeries, one of them being the placement of a dialysis catheter so that he could undergo daily peritoneal dialysis due to his kidney failure. He also had a G-Tube (feeding tube) and broviac (central line) placed at the same time as the dialysis catheter. All essential to Oakley’s health in the hospital and at home. After 65 days, we were able to take him home!

Over the next year Oakley was in and out of the hospital on a regular basis. Spending more nights in the hospital than at home. His care got even more complex as several more diagnoses were discovered.

One recurring reason he was admitted to the hospital was because he would contract urinary tract infections that made him extremely sick. The damage done in utero to his bladder and kidneys made him susceptible to harboring bacteria in his urinary system. The decision was made by his nephrology and urology team to remove his right kidney and ureter, repair his left ureter, and reconstruct his urethra. We also have tried to prevent infections with medication, as well as daily catheterizations to ensure his bladder is emptying fully.

During this time Oakley was also diagnosed with both central (brain) and physical (body) sleep apnea. He was put on oxygen any time he slept. Oakley outgrew both types of sleep apnea a year after being diagnosed and was able to come off of oxygen.
Oakley was diagnosed with hip dysplasia around 7 months old. Due to his age and the severity of it, we were told it could only be fixed with surgery. The hip surgery took place on his first birthday and he was placed in a spica cast, a hard cast that went from his ankles all the way up to his chest. Three months later the cast was able to come off and Oakley has been going to physical therapy and getting stronger ever since! He still wears a removable cast every night while he sleeps to further encourage the shaping of his hip socket and after he turns 2 it will be determined if he needs hip reconstruction surgery.

Around 15 months old we were finally able to start talking about the “T” word – Transplant. The search began to find him a living donor and fortunately Oakley’s grandma was a match and is scheduled to give Oakley the ultimate gift on April 11th, 2023.

Every day Oakley is subject to catheterizations, medication administration, dressing changes, broviac care, all of his vitals being taken, dialysis therapy, and more. No one likes to be poked and prodded, especially a toddler. But most of the time he not only tolerates this, but does so with a smile. Oakley has never known a life without multiple tubes and lines coming out of this body, frequent hospital trips, and surgeries. He has every right to be moody, to be sad and cry, but he chooses to be happy and be a light in our lives every day. Oakley’s heart is full of so much love and he is so strong. He has lived up to his NICU slogan, “strong like bull” in body and soul. He loves giving his stuffed animals hugs and kisses, and waving and saying “hiiiiiii” to everyone he sees. He loves “zooming” his cars and trucks, climbing the stairs, playing in his ball pit, going up and down his slide, and most of all being outside. Anything outside! Whether it’s sitting on the porch taking in the sights and sounds, riding his balance bike, or walking around with his walker, that is his happy place.

We are extremely fortunate to have known about his complications before birth so that we could have a chance to prepare. We chose to deliver and continue Oakley’s care at C.S. Mott Children’s Hospital where we really feel we have become like family with many of his nurses and doctors. Oakley’s medical team saved Oakley’s life and we can’t thank them enough for giving Oakley a chance. Oakley has an amazing team of therapists in Grand Rapids that have been essential to his progress and quality of life who we want to thank as well. We know Oakley has an army of family, friends, and even people we’ve never met or spoken to praying for him and cheering him on. Everyone we just listed has poured their hearts into Oakley’s recovery in some way, shape, or form and it’s because of this that we have made it this far. God has guided our family through this and blessed us over and over again. 

Thank you for taking the time to learn a little bit about Oakley’s story.

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 goes towards 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.