Kyle's and Justin's Fall Hunting

In October, Justin Lee, Mike Gehring and Rick Cornwell trekked into the wilderness at Bunch Hollow Conservation Area with their bows to hunt deer and Turkey. Bunch Hollow is a public hunting ground off of 24 Hwy near Carrolton, MO. The boys didn’t bring home any trophies but hope to have a chance to try again in the spring.

Justin’s brachial plexus injury doesn’t stop him from enjoying hunting and archery. He has a permit that allows him to hunt with a crossbow instead of a compound bow or long bow. A conventional bow requires two arms to position, draw and stabilize the bow, Then shoot the arrow. A crossbow allows the archer to draw and set the bow and insert the bolt (arrow) and then it is ready to fire at will. It is aimed and fired like a rifle or shotgun, without the kick. Cranks are available to help draw the bow, but Justin has developed his own way of doing it. Instead of standing on the foot hook and pulling up on the bow string with his arms, he site on the ground and pushes the bow out with his feet while holding the string. Way to go Justin! Nothing stands between a true hunter and his game.

Justin is a great example of what we can accomplish when we make an effort. Dedication, resolve and some good old-fashioned stubbornness have helped people with all abilities do things the never imagined they could. These are the same traits that can turn our difficult children into wonderful adults with any luck!

A Giant Leap of Faith

July 2002 brought us to a major crossroad in Kylie's brachial plexus injury rehabilitation. We were once again asked to make a decision about another surgery for her arm. It wasn't a muscle surgery like the other ones. This surgery would involve separating and repositioning the humerus bone of her upper arm. This surgery could change her life, but it was one that seems to stop most parents dead in their tracks - the derotational osteotomy (see before and after).

When Kylie was born, we had no idea we would be asked to make such major decisions regarding her future. We've finally come to the realization that her birth injury is permanent and we will all have to deal with it every day for the rest of our life better.

Over The last few years, Kylie has suffered with the effects of a poorly developed shoulder joint resulting from her injury. Her shoulder would not stay "in socket" Normally, the shoulder is a ball-and-socket type joint with the head of the humerus (long bone of the upper arm) being the” ball" and the glenoid fossa of the scapula being the "socket". The bones are held together by ligaments and muscles are attached that help with shoulder and arm function. Movement of the arm causes the head of the humerus to carve a socket into the upper side of the scapula, creating the joint. Many children with bpi have shoulder sockets that do not form properly due to lack of arm movement in infancy. This allows the shoulder to continually "pop out of socket" or dislocate, causing pain and decreased mobility.

In Kyle's case, she was also experiencing pretty severe internal rotation (arm turns inward toward the body) and significant lack of supination (turning the hand in the palm-up position). She had to limit her activity and discontinue gymnastics because of the pain.

Any parent knows that it is extremely difficult to make the decision to take your child through surgery. Results are not guaranteed. It is expensive. It is frightening for the family and the child. Recovery can be long and difficult. What if it doesn't help?

On the other hand, what happens if you don't do it? Perhaps your child would be missing out on the one chance that could make a difference. Some surgeries are done with a certain time frame for the best results and may not be an option at a later date. Weighing both sides can be excruciating.

After Consulting with Dr. Rahul Nath and Dr. Nelson Davino at Texas Children's Hospital and Dr. Robert Rinaldi at Children's Mercy Hospital in Kansas City, we had all our questions answered and were prepared to make a decision. We all agreed that Kylie could benefit from the derotational osteotomy and we scheduled her surgery for July 2002 in Houston.

Preparing Kylie was the most difficult task of all. We knew she wouldn't be voting for the surgery, much less the thought of leaving her best friend for a length of time. She was already giving us trouble about wearing her TES unit at night. She cried most nights of the week and tried to talk her way out of it. Fortunately we were able to present this as a selling point for the surgery. She would get some time off of her "unit".

That seemed to make the situation slightly better, but she still wasn't completely sold. Kylie always thought that surgery would "fix" her left arm -make if just like the right one. We didn't realize this until the splint came off after her capsulodesis surgery and she looked at it and said,” But my arm still isn't straight!". We had to painfully explain to her that no amount of surgery would ever make her left arm exactly like the right one. Nothing anyone could do would take away her injury. After that, surgery did not seem to be wonderful in her opinion.

With the help of Dr. Dawn Bloom, a child Psychologist, we were able tp prepare her as much as possible. We spent the time just before surgery on vacation to help take the focus off of the procedure. Kylie asked endless questions about her surgery so we encouraged her to make a list of them fro Dr. Davino. She had 13 in all! The day before surgery he sat down with her and answered every single one of them. All of our questions were answered as well.

Dr. Davino made sure that we had realistic expectations regarding the outcome of her surgery. It was important that we understand that this procedure was not going to correct the deformity in Kylie's shoulder joint. It would simply place her arm in a more neutral position so that she could use it easily. With her arm turned inward, she had more limitations on her mobility. It was difficult to turn her palm up because her hand was starting from an inward position. With her arm/hand placed in a neutral position she would have a larger range of motion. This would be more helpful for everyday activities in general. We also discussed the possibility that this procedure may need to be repeated down the road because Kylie's arm muscles may begin to turn her arm inward again over the years.

Kylie has gotten along pretty well with her disability so far, (mostly due to her extra stub-bornness!), however many tasks were still difficult for her. She didn't like depending on classmate to help carry her lunch tray or open her milk. She had to turn her elbow out and upward to get her hand to her mouth.

At this point she is right-handed. She might have been destined to be left-handed before her injury because both of her brothers are left-handed and her left arms much - it mainly acts as a "helper" to the right one.

Kylie was stoic about the surgery up until the surgical staff came to take her back to the OR. She doesn't like the gas they use to sedate her - even if she can pick what the smell will be. She says she can still taste the gas when she wakes up. Perhaps it is more that she doesn't like being out of control. I can certainly understand that. It was difficult for her at 7 years old to express exactly what she feared. It was difficult for us, because we didn't know how to help her. It was one of the saddest moments of our lives -having her taken from us, crying and holding on with a death grip. Deep down, we all knew it was best for her but it took every ounce of strength to let her and watch her go down the hall with strangers, knowing what she was heading for. I felt it strongly again for the millionth time since her birth - I wish it could be me.

The osteotomy involved making an incision in the biceps area of the upper arm. The incision is about 3 inches long and placed toward the inside of the arm. The bone was separated horizontally and the lower end of the bone was repositioned into the desired location. A plate and screws were placed to hold the bone in the new position. The tissue was sutured and a splint was placed on Kylie's arm.

We met Kylie in the recovery room. The surgery itself went great but Kylie had trouble with nausea caused by the anesthetic. We were able to leave the hospital around 4:30 that afternoon. We made it just in time to get stuck right in the middle of Houston traffic, Thankfully, my perceived experience with surgeries taught me to keep a large supply of Ziploc freezer bags and extra towels in the car for those long rides from the hospital.. I have learned a lot of stuff I wish I never had to know!

After the nausea subsided recovery was quick. For once, her arm was not in the "Statue of Liberty" position. This time it was like a regular cast where the arm is down at the side with the elbow bent at 90 degrees. She also wore a sling to help keep the weight of the splint from pulling downward on the surgery site. After two weeks, we removed the splint as instructed and took care of the incision. Kylie wore her sling during the day to help immobilize the arm. She had very little discomfort after the surgery. This was her easiest recovery, which surprised us considering the extent of the surgery.

Another exciting thing about the osteotomy was that it was the first surgery where we could see immediate results when the splint came off. Kylie realized she could now put her hand to her mouth and keep her elbow down. She could also turn her palm up enough to help support a tray. We were all excited about her progress. She was glad to get the splint off and get back into the swimming pool. She was discovering all kinds of new things that her arm couldn't do before. She even told us, "I love this surgery! It changed my life!"

Things were going great until about 10 days after we removed the splint. I noticed one night that her biceps looked big. After looking more closely, I realized that her upper arm was bowed but Kylie said her arm didn't hurt. An x-ray in the emergency room confirmed our worst fears - her arm had re-broken. Apparently she had used her arm so much while the bone was healing that it put stress on the bone and the plate causing the surgery site to be disrupted. That meant we were going back to Houston, ASAP!

Kylie knew there in the ER that she would have to go back for more surgery. She looked at us with big tears in her eyes. Before anyone could say anything, she cried’” I don't want to go back to Texas! I don't want to leave Louise again!".

Our hearts were broken for her. Once again, I wished that it were me. Couldn't I go do it instead? Please?!

"Honey, what can we do to make it better for you?", we asked.

"Let's take Louise with us!", she said emphatically.

So be it! We couldn't make her arm better but we could keep her heart from breaking. Louise's parents were kind enough to pack her up and send her to Texas with us for a week, Knowing that it would help Kylie get through this again. You would have thought the girls were on a long slumber party instead of getting ready for a surgery. Friendship is really something amazing!

The second surgery was shorter than the first. Dr. Davino removed the first plate and used a larger one. Kylie's arm was put in a cast and sling, and then she was sent to recovery. We would have to try to keep Kylie from being so active so she wouldn't stress the surgery site (no small task!). We left the hospital around 11:00 that day.

Kylie also had a humeral cast brace made to wear when the cast was removed. The brace was made from a mold taken of her shoulder and upper arm. She picked out a stylish purple leopard print for her brace. It is basically two halves of hardened plastic that are placed together to cover the upper arm from the shoulder to just above the elbow. This helps give the surgical site some protection without excess weight on the arm. It is held in place with velcro straps and a stocking is worn underneath to keep the skin dry and protect it from rubbing.

We made several trips down to Houston for x-rays and follow-up care. We were not taking any chances this time. In early November, we saw Dr. Davino and Dr. Nath to evaluate Kylie for a biceps-lengthen procedure we had scheduled at the end of December. When we had first discussed the osteotomy, Dr. Nath thought she would need both procedures to improve her mobility. We got some great news that day. Kylie got more improvement in supination from the osteotomy than expected. She would not need the biceps lengthening surgery right now. She was ecstatic! That was definitely the best Christmas present she could have gotten.

Her last x-rays (about 6 months post-surgery) showed that her bone was healing well. Kylie has returned to her normal activities, including Taekwondo. She is looking forward to swimming again soon. She still wears her cast brace for extra protection when she rides her bike or goes roller-skating. Her range of motion has definitely improved.

Kylie's left arm is still visibly shorter that the right one, but since the arm isn't turned inward any more her elbow contracture is less noticeable. This makes her arm look straighter since you're looking at it from a different angle. Her posture has improved as well. She is able to separate to a greater degree than before and she doesn't have to bend and lean to get her hand past neutral. Her arm is definitely in a more "useable" position than before.

We continue to work with Kylie's surgical scar on a daily basis. It has faded and flattened. We use Vitamin E ointment on it in the morning and Merderma ointment at night. We have also been using Curad Scar Therapy Treatment on it as well. It consists of a pad of silicone-type material that you place over the scar for an extended period each day. It was convenient since she was wearing her cast brace all day anyway. The combination of products seems to help even out the color and texture of the scare tissue so that it is less noticeable. All of these products can be purchased over the counter at most pharmacies and discount stores.

Significant scarring may be improved with plastic surgery procedures in the future. Most patients will not require this type of treatment. Unfortunately, you have to consider the scarring a tradeoff for improved mobility.

The protocol for the derotational osteotomy has changed somewhat since Kylie's adventure. Patients will likely be put in a cast immediately after surgery as opposed to a removable surgical splint. Children will have their humeral cast brace made before surgery and it will be fitted and sent home with the parents for use when the cast is removed. This should help reduce the chance for complications.

My suggestion to parents who are facing a decision about any kind of surgery for their child is to do your homework. Ask all of the questions you need to so that you feel you have enough information to make a good, informed decision for your child. Make a list so you don't forget what you want to ask. There are no stupid questions. A good doctor will spend time with you and your child evaluating him or her and discussing the procedure with you to make sure everyone understands what to expect. It also helps to talk to other parents about their experiences. When it comes to making the final decision, you have to consider your gut feeling. Sorry, there's no simple formula!

If you were to ask us if we would make the same decision again, the answer would be "Absolutely!". Thankfully, it was the right decision for Kylie at this time in her life. Kylie is pleased with the results and physically tolerated the surgery well. Emotionally, the surgery was tough - all of them are. With the help of GOD and some great doctors, family members and friends, she got though it and we are all pleased with the results. We hope her experience can help improve the lives of other brachial Plexus patients.

Dr. Rahul Nath is no longer with Texas Children's Hospital. His contact information is as follows:

Dr. Rahul Nath
Texas Nerve Institute
2424 W. Holcombe
Suite 204
Houston, TX 77030
Phone: 713-592-9900
Toll Free: 866-675-2200
Fax 713-592-9921
Email: drnath@drnathmedical.com
www.drnathbrachialplexus.com

Please feel free to contact us if you have any questions. I am always happy to have parents and children send me their thoughts on surgery or other treatment issues so that we can share the information.

If you have something to share, please email it to us!

PROPOSED LEGISLATION TO LIMIT VICTIMS RIGHTS

By Samuel K. Cullan, M.D., J.D.

President Bush and Republicans in Congress are pushing for massive changes in the legal system to limit the rights of victims of medical negligence. Republican legislators in Missouri have proposed similar draconian restrictions at the state level.

Victims of medical negligence are under attack coast-to-coast, as physicians and their insurance companies seek to limit the right to recover in ways that will make it much more difficult to obtain even a modicum of justice for children with injuries and others who have sustained life-long impairments as a result of medical and nursing incompetence.

While the proposals differ slightly, the major elements of this so-called “tort reform” are as follows:

Lowering limits on “non-economic damages”, i.e., pain, suffering, disfigurement, and loss of enjoyment of life. Missouri currently has a cap of $565,000. The cap in Missouri increases with the consumer price index annually. Kansas has a cap of $250,000. The Kansas cap was enacted in 1987. The Kansas cap is fixed; it is not adjusted for inflation. President Bush proposes a cap of $250,000 nationwide. The Republicans in the Missouri legislature propose a cap of $350,000.
Limiting the cap to one per victim rather than one per defendant. Under current Missouri law, the cap could be “stacked”, i.e. there is one cap per defendant. The proposed legislation would limit the caps to one per victim.
Limiting the victim's choices on where the suit might be filed. The proposed legislation would change "venue" rules forcing the plaintiff to file the suit where the negligent act occurred or in the county where the defendant resides. In smaller counties where the doctors are well known and there are very limited choices regarding selection of health care providers, this gives the defense a great and unfair advantage.
Limit annual payment of jury awards. While the details of the proposals vary, most require the verdict be paid in installments over time, without interest. For example if the victim recovered one million dollars, it would be paid out over five or ten years instead of in one lump sum. No interest would be paid on the periodic payments.
Loser pays costs and expenses. Many proposals require the party that loses the lawsuit to pay the opposing party’s case related expenses and attorney’s fees.
Restrictions on contingency fees. Most proposals impose “sliding scale” limits on the contingency fees that can be charged by attorneys representing the Plaintiffs in medical negligence cases. This system has been in place in California for decades. It would make it very difficult to find attorneys willing to represent victims of medical negligence, especially cases that require the law firm to advance tens of thousands of dollars, or more, in case expenses.
Shortening the statute of limitations for medical negligence cases. Currently in Missouri and Kansas the general statute of limitations for medical negligence is two years. In Missouri, children have until age 20 to file a medical negligence claim that occurs at birth. In Kansas, children have until age 8 to do so. There are several proposals to shorten this time frame, meaning that the right to pursue a claim could be lost if not pursued earlier.

The thrust of these changes is to greatly impair the rights of victims of medical negligence. Those of you who have been through this process know how difficult and challenging it has become. Doctors and insurance companies have pursued aggressive public relations and lobbying campaigns to make the public believe that the system is out of control so that these draconian measures can be enacted. They have done little or nothing to fix the underlying problems -- incompetent physicians and poorly trained labor and delivery nurses.

According to the data from the National Practitioner Data Bank, 4.8% of doctors are responsible for 51% of medical malpractice claims. 1.7% are responsible for 27.5% of claims. Despite this statistic, we keep seeing the same obstetricians in the Kansas City Community being sued for brachial plexus injuries multiple times. These physicians continue to practice. Their licenses and hospital privileges remain intact. Other physicians in the “medical fraternity” know of the injuries, but turn a blind eye to the incompetence of their peers. These so-called “reforms” ignore the real problem --- it is not possible to have malpractice without an injury caused by negligence or incompetence.

The purported basis for the so-called reforms is the “malpractice crisis”. Physicians claim that their insurance premiums are out of control. In point of fact some premiums have increased. Some should. The doctors who are repeat offenders and the groups that hire them SHOULD pay higher premiums. Their peers who sit by and witness the medical negligence, and do nothing, are complicit in the conduct. They also should bear a small part of the cost of the medical negligence.

What the supporters of this “reform” are not telling us is the following:

Tort reform does not bring relief from malpractice premiums. Those states that have enacted these limitations have similar or even higher premiums than some without.
Arbitrary caps on non-economic damages hurt those patients with the most serious injuries. The limitation on disfigurement seems especially unfair when a person will live with this “non-economic” injury for their entire life.
Access to the court system for those who are not independently wealthy will be greatly reduced. Justice should not be available only to those with six and seven figure incomes.
While malpractice premiums have increased for some, most physicians pay less for medical malpractice coverage than rent. Only 3.2% of their overhead is for medical negligence coverage.
There is no crisis in Missouri. The numbers of physicians has increased steadily.
The average award to a plaintiff in 2001 was $168,859, a 17.8% decrease from the prior year.
The number of all types of medical care provider claims decreased by 16% in 2001.
The total amount of “non-economic” damages paid decreased by 15% in 2001 and the economic damages decreased by 20%.

The medical and insurance industries have renewed their efforts to enact these proposals that greatly impact the rights of children with brachial plexus injuries. If we sit by and do nothing, these outrageous proposals will become law. For information on what you can do to fight these proposals, contact Sam Cullan at the Law Offices of Dr. Samuel K. Cullan & Associates, 4700 Bellview, Suite 415, Kansas City, Missouri 64112, 816-861-7600.

DR. SAM CULLAN is both a medical doctor and trial attorney. He is the senior partner and founder of the law firm of Dr. Samuel K. Cullan and Associates with offices in Kansas City, Missouri, and Phoenix, Arizona. Dr. Cullan is the Director of the Birth Trauma Litigation Section of the firm. He and his brother, Dr. Gene Cullan, represent children with brachial plexus and brain and spinal cord injuries. The firm limits its practice to catastrophic personal injuries from auto/truck wrecks, medical negligence and product defects.

Dr. Cullan graduated cum laude from the U.S. Merchant Marine Academy where he majored in Marine Engineering with a minor in Nuclear Engineering. He obtained his law and medical degrees from Creighton University in Omaha, Nebraska. Dr. Cullan is certified in Fetal Heart Monitoring. He is also double board certified in Civil Trial Advocacy by the National Board of Trial Advocacy and in Legal Medicine by the American Board of Legal Medicine.*

* Neither the Supreme Court of Missouri nor the Missouri Bar reviews or approves certifying organizations or specialist designations.