I am excited and honored to share my son’s BPI journey with you. We have learned a lot from our young son….lessons of determination, patience, bravery and strength. Thank you for taking the time to read Holden’s story!

     Holden was born on February 28th, 2007 after 9 hours of induced labor. He weighed in at 8 pounds 5 ounces. Not a huge baby, but much bigger than our older son who weighed only 6 pounds 15 ounces. Everything seemed to be going along normally until it was time to push. Since I had gone through labor before with our older son, I knew right away that something did not feel exactly right. I was pushing with all my might, but Holden was not coming out. I did not know what was going on, but I was terrified. There was a look of panic on the faces of the nurse, mid-wife, and my husband. Close to the time of his birth, additional staff members were called in to assist in his delivery. Two nurses pushed my legs way back (when I say “way back”, I mean so far back that I did not even know this position was humanly possible!). Another nurse was pushing on my stomach. When Holden was finally delivered, the mid-wife said she heard a “pop”, probably his collar bone. I was more concerned that he didn’t cry right away and his color was grayish purple. To be honest, I thought he was dead. They gave him oxygen and soon, he began to cry. That was the best sound in the world!

      We went to the appointment at the special infant care clinic on March 13th, 2007. This was the first time we had seen his arm without the sling for any length of time. It hung motionless at his side. He did have some finger movement, but no other arm movement. We were told that his clavicle fracture had healed and that he should be as good as new within 2 months. The occupational therapist also gave us exercises and stretches to perform and sent us on our way.

     With the sling off, we noticed that his elbow and wrist had an unusual appearance. His right elbow looked hyper-extended and he never bent his arm at the elbow. It just hung at his side. His wrist was also turned outward. Besides the unusual appearance, the exercises made Holden so upset that he would cry to the point of vomiting.  

     With the help of our pediatrician, we decided to go for a second opinion. It seemed there was something else wrong with our baby’s arm. Holden was referred to a pediatric physical therapist as well as an orthopaedic surgeon. The pediatrician also mentioned the possibility of a brachial plexus injury to us for the first time. Of course, we went straight home and began to research this type of birth injury and what we found out scared us to death.

     At Holden’s initial appointment with the orthopaedic surgeon, they did more x-rays of his right side. What they found was not only a broken clavicle, but also fractures in his elbow, forearm, and wrist. No wonder he was fussy during exercises. My poor baby! I cannot even express the guilt we felt that we had been exercising a broken arm. It hurt my heart to think of how much pain he must have felt.

     When Holden was 1 month old, we had our first of many visits with the physical therapist the pediatrician recommended. We felt so comfortable with her right from the start. T.R.Goins (Abilitations Children's Therapy www.actwc.com) was very smart, confident and reassuring. She confirmed that Holden did suffer an obstetric brachial plexus injury. Her recommendation was 1-2 PT visits per week, a brace to hold his wrist in a more neutral position, and a referral to a neurologist in Charlotte, N.C., who specializes in BPI’s.

     We saw the neurologist on May 16th, 2007. She said that on a scale of 1 to 10, the severity of his injury was a 6. She also mentioned the possibility of surgery to us. We were to come back in three months for a follow-up.  

     The next few weeks were filled with PT visits and at home exercises. Things seemed to have stabilized, and we had come to better understand our son’s diagnosis. Around the middle of June, we noticed that from time to time, especially after naps and first thing in the morning, Holden’s arm would be freezing cold. It would take it at least 30 minutes to an hour to return to normal. The temperature changes concerned Holden’s pediatrician and therapist, so we went back to the orthopaedic surgeon to rule out a blood clot. Thankfully, all of these tests came back fine. We were told that this can happen sometimes with BPI’s. When you don’t use a body part because of nerve damage, it can become cold. No need to worry unless the temperature does not return to normal.

     On August 1st, we went for our follow-up appointment with the neurologist in Charlotte. She said that she did not think that Holden was a candidate for nerve surgery. She seemed pleased with his progress, but we had some reservations. It is not that we wanted him to have surgery, but we knew from our research that the surgery was more effective when done early.

     We discussed her findings with Holden’s physical therapist and asked if she knew of another doctor who specializes in his type of injury. While we were happy that the neurologist felt that Holden was doing so well, we wanted to be sure that surgery wasn’t what he needed. Holden’s therapist understood that as parents, we wanted to do everything we could to help Holden. This was one of the many times that I left PT in tears. By the time I got back to work though, I already had an email from Holden’s therapist, T.R. An email that I have kept for the past 18 months and look at from time to time….I’m sure she has no idea how much it meant to me. It said, “I hope you found some peace after you left today. I want you to know I will do everything in my power to help him. I have great belief he can still conquer the world!”

     Holden’s therapist recommended Dr. Rahul Nath at the Texas Nerve and Paralysis Institute in Houston, Texas. (www.drnathbrachialplexus.com) Dr. Nath offers free clinics at different locations around the world to see patients for initial visits and follow ups. He has a license to practice in multiple states, but he only has a surgical license in Texas. We first met with Dr. Nath at a clinic in Philadelphia, Pennsylvania on October 20, 2007. He told us that Holden needed two surgeries before the age of two and a half.       Dr. Nath also told us that Holden’s arm usage was at about 40% and he hoped after the surgeries, he would be between 80-90%. What great news! Now for some not so good news….the bones in Holden’s injured arm are less dense and this is not reversible. He will never be able to play football, lacrosse, or other contact sports. The risk of additional injury is too high. Good news and bad news, ups and downs, highs and lows. That is how this journey has been for Holden.     Dr. Nath was so knowledgeable about Holden’s injury and confident that he could help him. We scheduled his first surgery for March 2008.

      It is no secret that any disability can quickly drain your bank account. The cost of travel, surgeries, deductibles and co-pays add up quickly. A group of our friends, without our knowledge, decided to help lighten our load. They called their project “Hearts for Holden” and presented us with not only a monetary gift, hotel and gas gift cards, but the most beautiful book I’ve ever read. All of our family and friends wrote the most kind, heartfelt, meaningful messages to us. Messages of hope, prayers for safety and healing, and lots and lots of love are in that book.

     We will treasure it forever! We are so blessed to have such a loving, supportive family and group of friends.

     On March 11, 2008, Holden had the mod quad surgery which consists of muscle/tendon transfers and releases. Dr. Nath performs surgery at Memorial Hermann Children’s Hospital in Houston, Texas. I cannot say enough nice things about this facility and the staff. All of the nurses were so great! The care Holden received was impeccable. And, the floor we were on was very cool. It was donated by Roger Clemens….baseball stuff everywhere! Each wing is decorated like one of the teams he played for. The hardwood floors look like grassy fields and baseball diamonds. The nurses’ station looks like a hotdog stand. The nurse boards look like scoreboards. Even the plates with the room numbers are baseballs. There are two playrooms, a theatre room and computer access for parents. There is nothing they did not think of when designing the kids’ floor. It is inviting, fun, and comforting, not sterile and scary like lots of hospitals.  

     Holden did really great with the surgery. He was out of it for several hours, but was walking the halls by that evening.

     The occupational therapist, Andrea Mettler, was so good with Holden. When she came the morning he was discharged and took the brace off, we were amazed. Holden reached up over his head for her keys. WOW!! When Dr. Nath saw him, he was so impressed. He had so much improvement right away, that he only had to wear his brace at night for two weeks (patients usually have to wear it for 4 weeks day and night). He also got a break from PT visits until the end of March.

     He had a 3D CT scan done on April 29th, 2008. The results were just as Dr. Nath suspected. His right scapula was higher than the left. The bones on his right side were smaller than the left (bad news), but did not appear to be shorter (good news!). We sent Dr. Nath a video of Holden’s progress and he recommended triangle tilt surgery for the fall.

     On October 16th, 2008, we returned to Texas for Holden’s second surgery.

     The triangle tilt surgery consists of a bone graft of his clavicle, shaving of his scapula, and a de-rotation of both his scapula and his clavicle. He had 4 one inch incisions on top of his shoulder. This surgery was much more difficult for him. He cried constantly the first few hours after surgery. It was awful, but things got better as the day went on. By that evening, he was some better and managed a trip to the hospital playroom.  

     The next few days were filled with tears (from mom, dad & Holden). But after the first week, we were all better adjusted. Initially, I thought he was so upset because he was in pain, but looking back, I think it was more frustration than anything. He was used to using both of his arms and now the right one was confined to the brace. Things really started to improve after that first week was behind him. He learned how to do things in spite of the brace….he literally learned to do somersaults using it as a kickstand. He got back to climbing, playing and wrestling with his older brother. And, once he figured out how to do things, he was back to his usual happy self.

    After 6 weeks, Holden’s brace was finally removed! The removal went well. We chose to have his therapist take the brace off. (I was ready for it to come off, but too nervous to take it off myself.) He looked at his arm like it was the first time he had ever seen it. His arm stayed in the same position of the brace for several days before he began to use it at all. This recovery has been much different from his first surgery. His results have not been instant. He has a long way to go, but we are confident that he will improve with time.

     We already know that Holden will need at least one more surgery. His collar bone did not heal properly, so Dr. Nath will have to repair it. The bone is very pointy and sharp. It looks like it could poke through his skin at any moment. We don’t know why this happened, all we know is that his bones shifted during recovery. Whatever the reason, I know that he will handle this surgery with the same grace that he always does. He always surprises me…..always does better than I could even imagine. His sweet spirit and fierce determination make up for all of his physical limitations.  

    As I write this, it is mid-December. Holden’s brace has only been off for a few weeks, so I cannot yet share with you all of his progress. But, I can tell you that I see him make improvements every day. Our hope is that with therapy, he will soon be bending his arm at the elbow and turning up his palm. I can already tell that the bow in his arm is less noticeable.

     We have learned a lot from our young son. He, like children do, has adapted so well. We are so proud of him and the way he has handled his injury, surgeries, and treatment. I’ve seen adults go though much less and not handle it as well. He amazes me everyday! In spite of all of the obstacles he faces, he is happy and content.  

We are happy to talk with any parent, grandparent, or caregiver who is trying to find their way through a BPI journey.     Please feel free to contact us with any questions.