October 2022 AMCer

Wren was diagnosed with clubbed feet at the 20 week ultrasound but it wasn’t until later in the pregnancy that Kerri and Justice found out he had Arthrogryposis. They saw a Maternal Fetal Medicine doctor with a high tech ultrasound but were only given a bunch of scary possibilities that turned out to be incorrect. Blood work was done to rule out trisomy 18 and a few other chromosome disorders. Finally they were sent to Primary Children’s Hospital in Salt Lake City, Utah where they met with a high risk ob gyn who officially gave the diagnosis of Arthrogryposis Multiplex Congenita (AMC).

Wren’s parents were told they wouldn’t know the severity of Wren’s AMC until after birth and that it was uncertain whether he would survive or not. On March 12, 2020 Wren was born. He was 5 pounds 12 ounces of absolute perfection! His itty-bitty feet were stuck up by his face but he was a little masterpiece and they were so happy to finally meet him. Wren’s Arthrogryposis affects him in all four limbs and his hips. He was born with clubbed feet and wrists, dislocated hips, and his could not move or bend his elbows and shoulders. His tiny arms just lay there, at the side of his body and his parents even caught him sucking on his little toes sometimes. 

Wren stayed in the NICU after he was born for minor feeding and breathing issues. He had an NG tube for about a week and was then released to go home after 12 days with just a little bit of oxygen to support his breathing. About a month later his pediatrician removed the oxygen and Wren was breathing perfectly on his own. Treatment for his AMC started at just a few months old. He first went to Shriners in Salt Lake City, UT where he started serial casting to correct his clubbed feet. He also started splinting on his wrists. Serial casting on his feet continued and included Wren’s first tenotomies to release the tendons at the back of his ankles. This whole process was not easy and after 4 months of a brutal casting experience that involved bruising, swelling, and weekly 10 hour trips to SLC and back, Wren’s doctor decided that his feet were too stiff to fix with casting and recommended a talectomy surgery at age one. This surgery would reposition the feet but also require invasive procedures and the insertion of hardware.

After a lot of research, questions, and discussion, Kerri and Justice decided that that surgery didn’t feel like the right decision for Wren and sought a second opinion from Dr. Vanbosse (Dr. Vb) at the Shriners Children’s Hospital of Philadelphia. Dr.Vb said the couple had made a smart decision to avoid the surgery and that after the swelling and inflammation in Wren’s feet went down, he believed he could fix Wren’s feet with proper casting and a second round of tenotomies. The family also met Dr. Zlotolow (Dr. Z) while in Philly, who recommended elbow release surgeries on both of Wren’s stuck elbows. Wren’s parents felt completely at ease with the treatment plans Dr. Vb and Dr. Z presented so, a few weeks after Wrens first birthday they traveled back and Wren had his first elbow release and second tenotomy in addition to further rounds of serial casting.

All of this was successful and Wren’s feet have been straight ever since! Wren’s elbow gained over 100 degrees of flexion from the elbow release surgery and he can now feed himself!! About 6 months later, Wren had his second, successful elbow release surgery with Dr. Z in Philly.

After hearing about Dr. Feldman at The Paley Institute in West Palm Beach, FL Wren’s parents wanted to get an opinion on treatment options for Wren’s stiff knees. Dr. Feldman recommended a stay in Florida for a few months to work with the incredible OT and PT team at Paley before making any surgical decisions. While receiving OT at Paley, Wren received serial casting on his clubbed wrists which helped them become more straight and a lot more functional for Wren. We also worked hard in PT where Wren starting getting up on his feet to strengthen his legs for future walking and working to gain more range of motion in his knees.

After about 6 weeks of intense therapy, Dr. Feldman felt that therapy alone was not going to be enough for Wren’s knees and recommended a major surgery but Wren’s parents aren’t ready to commit to that surgery yet as it will take a toll on his little 2 year old body and require months and months of painful rehab afterward. Dr. Feldman said it’s okay to wait until we feel Wren is ready so the family is considering the surgery for sometime next year.

For now, they are continuing therapy at Paley to improve the strength in Wrens legs and continuing casting to help his wrists become more functional. Hopefully Wren will begin walking soon. He will also have some casting on his left elbow to combat some regression that has happened since his surgery.

Wren’s necessary therapy sessions have exceeded the annual max allowed by the insurance company and all additional visits must be paid out-of-pocket (at $300 per session). Kerri and Justice are incredibly grateful to Helping AMC Families Incorporated and their generous donors, for awarding their family a $5000 grant. This grant is not only covering the remaining physical and occupational therapy visits Wren needs but also their lodging expenses. The family will likely still have a bit of a grant balance, which can be used up to October 2023 and could possibly help with future medical/medical travel expenses when the time comes for Wren’s knee surgery.