My third child, Rowan, made her debut on July 23, 2004. I was about a week overdue. Rowan had a tight umbilical cord wrapped around her neck, which had to be cut before she was fully delivered. She was a dark purple color at birth, and she was not breathing. After thirty seconds or so, the nurses had revived her. She changed to a healthy pink. Her first Apgar score was two, the next one was eight. Rowan weighed-in at a hefty 9 lbs, 2 oz. Almost immediately, we were told that her left arm was injured. Two people on the medical staff stated that it was a shoulder dislocation. We were grateful for her life, but concerned about the limp little arm.
In the next couple of hours, the pediatrician said the problem was not a shoulder dislocation, but Erb’s palsy, a brachial plexus injury involving the shoulder and neck, something I had never heard of in my life. I certainly had no idea that my baby and I were at risk for this injury. We were told that it was nerve damage which would probably resolve on its own, and that we should take her to a neurologist soon.
Other problems arose that had nothing to do with her arm. Rowan was not voiding well, her diapers were not very wet. She had to be catheterized to empty her bladder. This was done several times over the next 2 days, and we finally asked to be transferred to a larger hospital with pediatric expertise. Kidney failure was more worrisome than the Erb’s palsy at this point in time. But, thank God, Rowan responded to special intravenous electrolytes, and her kidneys and bladder function normalized. It was nothing short of a miracle, considering that her kidney scan showed calcifications on the outsides of both kidneys. The doctors were puzzled, but within three months the kidney scan was normal.
Zero to Three Months Old
We gave her time to recover from the birth trauma and then began exercises at 1 week old. At three months old, her left arm was only showing us a twitch of movement here and there. The arm would twitch upward from her side, against gravity. Although this was not much progress, it was exciting to think that she might be healing on her own.
Four to Six Months Old
At four to six months, Rowan recovered MUCH of her arm movement. She began pulling it all the way up to her mouth. She crawled between six and seven months of age, using both arms, much to our surprise. Her arm was getting stronger and becoming more mobile, but she always held it up, close to her chest, and bent at the elbow. She was not able to turn her palm up at all. Non-supination is a real problem with this injury.
Rowan had physical therapy starting when she was two weeks old and continues this today, as I am writing this, on a less rigorous schedule. Our therapists from the hospitals and from the Birth to Three Program in our state were all very helpful and supportive. I only had one bad experience with a young therapist who forced a movement with Rowan that I believe hurt her very much. Since physical therapy can sometimes be painful, I thought the therapist was just doing what was needed. Thankfully, I wised up, and I never let that happen again. I learned that it is important not to force any movement, staying with the “no pain” philosophy as much as possible.
Seven to Eight Months Old
Our local neurologist did not give us any hope for further recovery. He was very clinically capable, but to my mind, a pessimistic man. Rowan was reaching a plateau. No new movements were occurring, and she still had lower reflexes in the affected arm. She continued to hold it in flexion at the elbow. I was emotionally crushed. A few days later, I talked to a therapist who had heard of Dr. Kozin at Shriners Hospital of Philadelphia. He and his staff proved to be the most caring individuals I had ever met in the medical field. Through our visits to Shriners, we learned that Rowan’s injury stemmed from C5 and C6 vertebrae of the spine. Her hand and arm movements ruled out any further damage. At every new check-up, the doctor and therapists looked at her arm movements, measured angles and degrees of rotation, and gave advice to promote further recovery.
Sixteen Months Old
Rowan was followed at Shriners for nearly a year before it was decided that her muscle imbalance had caused her shoulder joint to go out of position (seen by MRI.) At this point, the news was almost a relief to me. Why? Because I was doing everything in my power to make her arm better and nothing was happening. I was exhausted.
As moms, we often feel guilt for our child’s injury. I have always dealt with some guilt in Rowan’s situation. For example, one cannot help but wonder, “DID I DO ENOUGH? DID I EXERCISE HER CORRECTLY?” (Even today, I still feel guilt if I don’t do some kind of stretching or strengthening activity with her daily.) The therapists and I did our very best, but Rowan still needed surgery. Through this experience, I can sincerely say to other mothers that no matter how hard we may try, some things are still beyond our control!
Just a month before the surgery I took Rowan back to the local neurologist, who put me in a panic about whether or not the surgery would make any difference. I called the medical staff at Shriners Hospital. Dr. Kozin called me back and answered all of my questions. He counseled me through my fears and misconceptions and gave me hope! Needless to say, I never took Rowan back to the pessimistic neurologist, and later her recovery proved him wrong.
Rowan had an arthroscopic anterior capsule release at 20 months of age. The surgery went very smoothly. I was so happy to see her in the recovery area. She was yelling for me, groggy and dry-mouthed. One foot had an I.V. in it. She held it up, saying, “Off, off.” She had a purple spica cast around her trunk and left shoulder, ending at the wrist and hand, but she was unfazed. I knew that God gave her a determined personality which would help her through so many ordeals.
The overnight stay in the hospital was difficult, because Rowan felt uncomfortable and tethered. She was medicated, and by the next morning during doctors’ rounds, she was much better. By the afternoon, her I.V. was taken out. She was walking around with the cast on as if it didn’t bother her at all. When we returned home, the cast never stopped her from running or playing. Rowan was generally happy. She was in the cast for about four weeks.
POST- OP CARE
We tried our best to keep Rowan from tumbling or falling with her cast on, but she was an active two year old, and very top-heavy! The only solution was to try to follow her wherever she went. She still tried to manage climbing even with just one arm free.
The actual surgery was easier for us than the return to the hospital for cast removal, therapy, and fitting of the splint. After an eight hour car ride with a toddler in a shoulder spica cast, anyone would feel inadequate and ill-prepared for a week of therapy!
A very helpful physician’s assistant removed the cast with great precision and care, but Rowan was horrified and traumatized by the noise of the blunt saw. She then developed a fear of the medical staff for the next few months after that. She often cowered and refused to be cooperative. I had to continually hold her, coax her, soothe and comfort her. That took its toll on me, and I was sorry that the medical staff only saw her at her worst moments! I was afraid they would begin to dread seeing us, but we were always treated so well and given so much encouragement and love.
I vividly recall my lowest point during post- operative care. It was mid-week, and I was driving to the hospital alone with Rowan in her splint. We were to have therapy at 10:00 am. She was very cranky that morning, and by the time we drove into the parking garage, we were both sobbing. Thankfully, she fell asleep, and I made a quick call on my cell phone to alert the therapist, asking if we could postpone the session a half hour or so. She was so very understanding and agreed it would be best to wait. So there I was, alone with a sleeping toddler in a minivan, in the parking garage of a big hospital in the middle of a strange, big city. I lost it. I don’t know how long I cried, but it was long enough for Rowan to complete a pretty good nap.
When we finally made it to therapy, things went well for a while, and then the stubborn screaming fits began. The therapist did her best, but after 45 minutes, Rowan was ready for a break, and I was seriously in danger of another crying jag. That’s when Dr. Kozin entered the room. He addressed Rowan in the most calm and caring manner, and said, “When it gets to this stage, it’s over,” meaning that we should stop the therapy session and try again in the afternoon. He gave me a reassuring smile, and entertained Rowan for a minute or two. Later, a therapist asked the doctor whether she should call Rowan’s home therapist to explain some exercises. He replied, “Oh, Mom can handle that. Mom’s great.” Honestly, I wasn’t sure I was able to handle anything at that point, but I was continually encouraged and made to feel capable. This illustrates that our choices in medical care for our children are so important. The attitudes of people around us can make or break our child’s recovery. I could not have found a more caring doctor or a more agreeable medical team.
After surgery, we went back to the hospital every four months for follow- up. Between the ages of two and three, Rowan was continuing occupational and physical therapy about once a week and visiting Shriners for check-ups. I had seen some internet sites that said e-stim (or TENS units) was really helpful in getting more muscle tone. I wondered if it would stimulate the nerves and the muscles, or at least “remind” the nerves of the connection to the muscles. We tried e-stim for about four months. Unfortunately, we could not be consistent enough with its use. We did get some results. The scapula was winging a little less, but we were not sure it was due to the e-stim. Dr. Kozin felt that the muscles were responding due to Rowan’s high activity level, not so much the e-stim.
On Rowan’s one year post-operative visit, her progress was fantastic. She had a repeat MRI, which came back okay. (Incidentally, the sedated MRI is harder for me than I anticipated. Watching my child go under anesthesia is disconcerting, to say the least.)
I can see a BIG difference if I think about what Rowan could not do pre-surgery. I’ve tried to illustrate this in the attached pictures, also. She can reach upward very well, she grasps things behind her neck easily, and she can even turn her palm up!! She still has a small bend in her arm, but not too noticeable. She will often hold the left arm higher than the other out of habit. Her left shoulder slopes more than the normal side, but her functionality is great! She can even put her hand behind her back.
If you are a mother dealing with BPI, take heart. As Rowan has become more independent, my worries and false guilt have lessened to some degree. I must accept that I cannot be in control of every movement she makes, and I cannot use every playtime as a way to sneak in therapy exercises. I have to let her be a normal kid in spite of her injury and hope that other children will accept her as she is.
I am happy when Rowan thinks she is like everyone else. For instance, Rowan’s big brother always prays for her arm at bedtime. Recently, Rowan voluntarily began praying for his arm as well, returning the favor although he has no injury. I was elated, taking the moment in, realizing that Rowan must not feel different from anyone else. But then there are times when my heart sinks, those times when I ask her to rotate her arm into supination, or reach up and out, and Rowan states, “I can’t do it. My arm is sick.”
Nevertheless, we keep encouraging her to use the arm. My stretching and exercising sessions at home with Rowan have become more laid back. I don’t feel as stressed to keep her in therapy all of the time now. I take her to gymnastics weekly. Still, every time our post-operative check-up is near, I begin worrying that I am not doing enough. It’s an emotional rollercoaster, but that has gotten better as she has grown. Much of our gratitude must go to the staff at Shriners Hospital of Philadelphia for their continuous support.
In the future, I imagine we will still have those emotional moments. Rowan will have to accept and understand her injury. She is just recently asking questions like, “Why is there a scar on my arm?” and “How did I hurt my arm?” I answer her to the best of my ability with age-appropriate responses. In future, maybe the injury will be nothing but a slight inconvenience to her, or maybe it will cause a huge self-esteem problem. Who knows, but I have a feeling that as her mom, I will have a great impact on her attitude toward the BPI. I have a very difficult task ahead of me. Despite my own feelings of sadness and hurt for her, I have to put on my brave face and tell her she can do anything. With any luck, she will believe me.
THANK YOU- A very heartfelt thanks goes to Dr. Scott Kozin, therapists Danielle, Sarah, Cheryl, as well as Maureen and Linda. Through your work with children, you are helping to make the world a better place. You have touched our lives. Rowan and I are indebted to you.
CONTACT INFORMATION- Go to Shriners for more information on other children like Rowan that Shriners Hospital of Philadelphia is helping. Please donate!
I am always happy to talk with anyone who needs encouragement in situations dealing with BPI. Thank you for reading our story. I hope it will help moms, and children like Rowan, in some small way.
GENERAL TIPS AND ADVICE
A wise person once told me, if a child is crying and is not in pain, the cause is usually hunger or exhaustion. I learned to bring snacks to every doctor’s visit, and a blanket or stuffed animal to use for comfort and rest. It’s kind of a no-brainer, but you would be surprised at the “common sense” stuff you forget when you are under stress.
Also, try to surround your family with positive people who are willing to support you emotionally. Everybody needs somebody.
For questions on BPI, I usually use the UBPN website or just “Google” my queries. And of course, I check with our doctor.
Finally, I think that too much broad information from the internet can put you in a panic about your child’s well-being! I have learned to be picky about my information sources.
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