Parent Insight
by Pamela Bellermann

From the Editor: This article is taken from a talk that the author delivers each year to medical residents at the hospital in which her son has been a patient many times.

I am here to talk to you about my son Patrick who is known to most people as a cute, kissable, delicious (as described by one of his nurses), friendly, challenging, and very courageous five-year-old.

To the medical and educational communities he is more often seen as a collection of labels and diagnoses, including: periventricular leukomalacia, seizure disorder, cerebral palsy, cortical blindness, cortical deafness and cochlear damage, asthma/reactive airway disease, gastroesophageal reflux (repaired), developmentally delayed, multiply handicapped, and chronically ill/medically fragile.

But to the hundreds of doctors, nurses, therapists, teachers and other professionals who have worked with him, and to his family, perhaps Patrick's greatest role thus far in his young life has been that of "Teacher."

Patrick has taught us many important lessons. For example, he has shown us that very little in life can be taken for granted; that blood tests, x-rays, and brain scans can be meaningless, and that looking at and listening to a child is far more valuable. And that you should not—nor is it fair to—make assumptions about any child, particularly one who is disabled. Patrick has taught us to always expect the unexpected and to always be prepared. To most families with young children, this usually means that you don't leave home without an extra change of clothes, Cheerios, a juice box, and extra diapers and wipes for that inevitable and always badly timed diaper leak. But with Patrick it means never leaving home without the emergency bag, oxygen tank, and backup, portable suction, portable nebulizer, pulse ox, ambubag, bi-pap, feeding pump, Diastat, and at least a day's worth of medications in the event you end up in the emergency room and are admitted.

Patrick has also taught us about priorities, and how precious life is, and that a sense of humor is a necessary and vital survival tool to get you through the crises that arise. I'll never forget one trip to the ER. Patrick was pretty sick and did look really bad. But the doctor assumed he was worse off than he was because he saw that Patrick couldn't even hold up his head or sit. I had to point out that even when Patrick is healthy, he can't hold up his head or sit.

In the past three years, with trips to the ER and twenty-three hospitalizations, we have spent over 300 days in the hospital. Thus Patrick has had the opportunity to initiate many new residents, like you!

Because Patrick is such a magnet for germs, we are doing whatever we can to avoid being in the hospital. This year, Patrick has been hospitalized only three times, thanks to a portacath that was inserted last fall. I am able to treat Patrick at home myself with IV fluids and antibiotics. Never did I think when I became a parent that I would be doing IV's and changing dressings! But I'll do whatever it takes to avoid another stay at Hotel St. Barnabas.

Being an educator, I learned early on that my students were my greatest teachers. No textbook or college professor could have ever begun to prepare me for the challenges I encountered in the classroom. Very quickly, my students taught me how much I didn't know. As doctors, your greatest teachers will be your patients. And no one can better teach you that kids are not textbooks than a child like Patrick. As many doctors have said, Patrick is writing his own textbook.

Patrick has been known to leave teams of doctors both here and in New York, scratching their heads, totally confused, and frustrated trying to figure out what is wrong with him. He has a medical history that would rival any 90 year old's.

Patrick's story began long before he was born. I tried very hard to become a mother—I lost six babies (all for different reasons) and had numerous other problems before I was able to carry to term our oldest son, Peter, who is seven and a-half years old. In addition to being a mom, I am a special education teacher and consultant. I have worked with babies, children, and young adults with all types of disabilities for more than 27 years. But nothing in my past experiences has even come close to preparing me for my greatest challenge yet—this little guy, Patrick, who was born fourteen weeks early.

After going through all we did to have Peter, we had planned on him to be our last child. So it was quite a surprise when I found myself pregnant nineteen months later with Patrick without even trying and without medical intervention. My husband still insists it was an immaculate conception!

The pregnancy was eventful from the start. Patrick was very likely a twin—the other egg implanted in the same tube as a previous ectopic pregnancy. Fortunately, the egg dissolved on its own, but while watching that, it was discovered that I had a total placenta previa. We knew very early that we had another little boy and the amniocentesis showed he had no apparent problems.

We prayed that the placenta would move as the baby grew, but it didn't. I ran into trouble at nineteen weeks when we thought I had miscarried yet another baby. As we raced to the hospital, Patrick started to kick. It was the greatest feeling in the world to know he was still with us! But I would have to spend the rest of the pregnancy in the hospital flat on my back.

Our goal was to get to the 30th week, at least. We didn't make it. Early in the 26th week, the placenta gave out and I hemorrhaged and went into shock. To save me, they had to deliver Patrick. His heart had stopped beating. He was not expected to live.

And so began the greatest battle of our lives. The night Patrick was born his lungs collapsed. Three days later he had a grade IV brain hemorrhage. A week later his intestines ruptured in 3 places and he was given a slim chance of surviving the resulting infection and surgery to repair the ruptures. A month later, after having a routine PDA ligation, he became profoundly ill and the doctors told us to baptize him because he was dying. All of his systems had shut down and he was bloated many times his size.

Because Patrick was so fragile and sick, I had never had a chance to hold him, so I asked if I could. I wanted to hold him while he was still alive. What a joy it was to finally hold Patrick! He was only 1 pound 2 ounces at the time. He was so tiny! The rest of my life I will never forget that moment. Patrick looked up at me with eyes that said "Don't worry Mom, I'm here to stay—don't give up." We baptized him with our tears.

Patrick surprised them all by surviving the illness that killed three other babies that weekend. He had been the smallest and sickest baby—but he was the only one that lived. People from all over the hospital in New York were talking about Patrick who came back to life with very little medical intervention.

However, he continued to have major medical problems throughout the 108 days he was in the hospital. He had four risky surgeries, more than a hundred x-rays, over 90 blood and platelet transfusions, numerous blood infections that nearly killed him and he was on a respirator and CPAP for 4 months. Many more times we were told he would die. But he never gave up and we did not either.

We left the hospital not knowing what his prognosis would be as a result of the brain hemorrhage and the other problems he had had. We were given varying predictions by the doctors, most of which were very pessimistic. One doctor even suggested we think about putting him into a home. But after so many months of wondering if Patrick would even live, we were thrilled to be able to finally take him home. Our thoughts were certainly not on how handicapped he would be.

We had a relatively calm year and a half after Patrick came home—other than the many visits to the pediatrician for chronic ear infections that persisted in spite of tubes, and only two trips to the emergency room, he remained surprisingly healthy. Although Patrick's care was time and energy-consuming and demanding, we managed the best we could. We were determined to do whatever we could to help him.

Being a special educator, I knew how crucial it is to help a child like Patrick early in his life. I made sure he received all the services that were available to him and we worked with him around the clock. Our efforts paid off. In spite of his major problems, he exceeded the expectations of all of his doctors until...three years ago, when Patrick began a downward spiral that he is still struggling to climb out of. Many health problems arose that have set him back quite a bit. It began with some interactions to drugs commonly used to treat congestion that caused his seizure disorder to become active.

Then, after being finally convinced by others to accept some outside help with Patrick, an inexperienced home health aide, while feeding him, placed him on his back when he vomited. Within a few hours, Patrick was struggling to breathe and I rushed him to the hospital. He had aspirated and had pneumonia in both lungs. The inhalants used to treat the pneumonia caused his seizures to go totally out of control.

A month later we were back at the hospital with a diagnosis of asthma/reactive airway disease which was most likely a result of the aspiration pneumonia. New seizure and asthma medications caused Patrick's reflux (which we didn't even know he had), to become severe enough that it had to be treated surgically and a G-tube inserted. More hospitalizations followed for new bouts of pneumonia, dehydration, two rounds of rotavirus, high fevers and a seizure that took six hours to control.

Two years ago, Patrick spent the entire summer in the hospital. It all began with a severe reaction to a commonly used medication to thin his secretions, something we were trying in an effort to avoid a trach and decrease further bouts of pneumonia. Three days later it was discovered what was causing Patrick to have pain the cause of which had baffled the doctors both here and in New York for many months. Patrick not only had acute hemorrhagic pancreatitis, but a gall bladder full of stones and sludge! All at the ripe old age of three years!! The doctors were stunned!

Patrick had his gall bladder and appendix removed. It took three months for him to recover from the pancreatitis and get back on his G-tube feeds. More recent hospitalizations were for various types of pneumonia and atelectasis, gastroenteritis, seizures, another bout of pancreatitis, hepatitis, and line infections.

A major discovery was made when tests were being done to find the source of bleeding from his G-tube. An endoscopy showed what may be the cause of his frequent aspiration pneumonias. Patrick's surgery to repair his gastroesophageal reflux included a Nissen Fundoplication. The Nissen was done to prevent the stomach acids and contents from entering the esophagus. When Patrick was being scoped, the doctor found he was unable to get the scope through the Nissen. So he had to scope him through his G-tube stoma. If the doctor could not get the very thin scope through the Nissen, how was food that was given by mouth or thick mucous or saliva getting through, I asked?

A barium swallow X-ray gave us the answer to that important question—a pouch had formed at the base of the esophagus where food and/or secretions sat until they slowly drained through. In the meantime, when the esophagus contracted, secretions were going back up and Patrick was very likely aspirating them.

The big question, how to fix the problem, is still being worked on. Those who know Patrick the best, know that there are never easy solutions to problems and surely no quick fixes.

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The message I hope you'll remember the most from this talk is this: when you are treating children like Patrick who have many complicated medical issues, it is crucial that you listen to the parents.

In the past, one of the greatest fears we have had is that doctors who were caring for Patrick would not take the time to get to know him or to listen to us, his parents. We worried that they would make assumptions and decisions based on what's "normal" or typical—or what "the textbook says" as numerous residents have said to me regarding concerns I have had about Patrick. I remind them that Patrick is not a textbook, nor has he read their textbooks.

Not listening to parents can sometimes have dire consequences. During one hospitalization, a mistake was made with Patrick's seizure medication and Patrick received a quarter of the amount he normally receives for two and a-half days. His phenobarbital level quickly began to drop and he began showing behaviors that were certainly not typical for him.

We were very upset that the error had been made, but people are not perfect—mistakes do happen. What frustrated us the most about the experience is that we knew something was wrong, very wrong, with Patrick and no one was listening to us!! He became very agitated, excitable, irritable, he didn't sleep for more than 24 hours, and he had a wild look in his eyes. He became more spastic than we had ever seen and he began having dozens of seizures much stronger than his usual seizures.

Because he was vocalizing and so animated, people tried to convince me that he was just feeling better—that this was the new Patrick. Another doctor told me that it is typical for kids with CP to become more spastic as they get older. Frankly, that comment scared us half to death!

One resident even brought her textbook to show me that Patrick's behavior was normal for a four-year-old. I wanted to throw her textbook across the room and yell that the textbook also says that Patrick should be skipping, riding a bicycle, and talking in sentences! The majority of normal kids with normal brains are doing those things, but Patrick is not normal, nor is his brain! And the behavior he was showing was not normal for HIM!

Finally, Patrick's heart rate, temperature, and blood pressure began doing some crazy things that made everyone begin to take notice and listen to us. At my insistence, a phenobarbital level was done. The level was way down and when I put two and two together, I realized that Patrick was not getting the correct dosage of seizure meds. Patrick was going through withdrawal. He was miserable. It took more than a week and many seizures later to get his levels back up.

I can't even begin to imagine what that experience felt like to Patrick. I was scared—I know he was scared. We both cried a lot that week.

That was only one of the many experiences we have had when we felt we were not being listened to. Another doctor decided that Patrick was not in much pain because he was not yelling as loud as he should be. Little did he know that Patrick's whimper is a normal child's scream. Nor did he ask those of us who know him the best.

Because Patrick's disabilities and health issues are many and complicated; little is ever clear cut with him. In fact, he is usually the exception to the rule—the 1%. It is crucial that doctors rely on us, his parents, to let them know if something is typical or not for Patrick. Doctors who are not willing to listen to us or who do not include us in the decision making process no longer see him.

Patrick is on anywhere from 18-20 medications a day. When you are on that many medications, it is not humanly possible to know every interaction the meds may have. When I question doctors about side effects of medications, and they brush off my concerns, I remind them that Patrick many times has had rare reactions that no one ever expected. Patrick's gall stones may have been a rare side effect of the many months of TPN he had as a preemie. It is believed that a commonly used seizure medication probably caused the pancreatitis that could have killed him. Again, rare, but possible.

We have learned that you cannot always rely on x-rays and other tests to find out what is wrong with Patrick. What is more important is what he is showing us clinically. Brain scans show that he should be totally spastic—stiff as a board. But he is not. Before he got sick two and a-half years ago, he was just learning to use a walker.

Patrick is also supposed to be deaf. When doctors repeated his hearing tests they showed that his hearing had deteriorated—that he should be profoundly deaf. But we know he is not! He is imitating sounds, saying words, and following simple commands. He loves music. He even used to nurse in beat with the music. He is obviously using a different part of his brain with which to hear.

Figuring out what is wrong, or if something is wrong, is always a guessing game with him. We know the frustration this can cause you as doctors because we feel it all the time, too. We find ourselves hoping that he has an ear infection, or a pneumonia that shows on an x-ray, just so we don't have to guess what else might be going on.

But we do know that we must act quickly when Patrick shows us that something is wrong. We have had many, many scary close calls with him, he can turn bad so quickly. When caring for Patrick, one must always be on guard and prepared. We have discovered that the best doctors and nurses for Patrick are the ones who are afraid of him. We live in a constant state of anxiety wondering when the next crisis will arise and whether or not we will be able to handle it. That fear keeps us ready and prepared to face what we have to.

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Please don't make assumptions about what children like Patrick with disabilities can or cannot do based on what you see at first glance. Because Patrick is slow to respond and responds so differently, most people, including professionals, often make the assumption that he can do very little. Patrick's many illnesses and disabilities have made it very difficult for him to show us all that he can do. But if you take the time to get to know him, he will amaze you with his ability to compensate and you'll see how hard he tries to do things.

He will work for hours to get a rattle to his mouth in just the right position to chew on it. His arm will be shaking from the effort—but he keeps trying until he gets it. Patrick rarely gives up. Because of his cortical blindness, he is able to see objects and people best when they are moving. If he is trying to focus on something that is stationary, he will make the object or person move by moving his head from side to side.

Many people are surprised to learn that Patrick has used switches and other devices since he was a year old with many different parts of his body, and that he operates a computer using a switch. He was fortunate to have been born in an age where technology will allow him to do things he otherwise would not be able to do.

Patrick has been riding a horse since he was 2 years old. Hippotherapy has worked wonders for him. He sits best and has the most head control when he is on the horse.

One of your greatest challenges in dealing with families of children with special needs or health issues is knowing what to say to them and how to say it: how to be optimistic, yet at the same time realistic, so as to not give false hope.

Although we knew very early that Patrick would most likely have some disability—we didn't want to believe it. It took a while for us to accept that Patrick is handicapped. And we still mourn the loss of our "perfect" child. But we love Patrick for who he is—a charming and lovable little boy—our special gift who has given true meaning and purpose to our lives. As with most families with disabled children, getting to the point we are now was a long and difficult process. Like Patrick, we had to take things step by step.

The decision to get Patrick a gait-trainer and a special stroller several years ago was agonizing. Getting special equipment was admitting to ourselves and the world that Patrick was handicapped. In public, Patrick in a regular stroller was just another baby. Patrick in his gait-trainer or special stroller was a statement.

It was here at the hospital that I took Patrick for the first time outside of our home in his special stroller. It was a big step for me, but I was able to take that step because I felt so comfortable here among the doctors and nurses who know us well and have accepted and see Patrick for who he is, a terrific little boy, and not his disabilities.

Like many parents of exceptional children, when we were first told that Patrick would be disabled, our concerns were for the future. Who would take care of Patrick when we were no longer able or if something happened to us? In light of Patrick's many medical issues, our concern now is whether there will be a future.

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I'd like to share with you some final thoughts and suggestions:

With children like Patrick, you must be a team player. Patrick currently sees more than twenty doctors and specialists. We rely on all of them to cooperate with each other and together come up with the best plan of care based on Patrick's needs.

Please take the time to read his chart and other doctors' notes. One doctor seemed almost proud when he told me that he doesn't read other doctors' orders. Patrick's medical problems are usually interrelated. He never has just one medical issue going on at a time. When Patrick has pneumonia, he usually also has seizures and/or GI issues or vice versa.

Nothing gives us more confidence in the medical care Patrick is receiving than when his doctors gather around his bed and discuss with us and each other what is going on and what to do about it. Every one is part of the plan, including us. Doctors who take the time to consult with each other are doctors who really care about the patient.

We no longer see the doctor who doesn't read other doctors' orders.

Because so many doctors are involved in Patrick's care, one problem I have encountered in recent hospitalizations is miscommunication or inaccuracies in what is being said to various doctors, particularly the specialists. The specialists often call to inquire about how Patrick is doing and they have been given inaccurate or misleading information. This has become such a problem that the specialists and I have agreed that if they want an update or if I have questions, we talk to each other directly. Be careful that the information you are relaying to other doctors is updated and accurate.

Be patient and don't be afraid to say "I don't know." There are a lot of uncertainties with Patrick—he requires much detective work and thought. There are many times when Patrick does not have a clear-cut diagnosis. We have learned that the best doctors are those who don't hesitate to say "I don't know." We don't expect any doctor, especially residents, to have all the answers.

Be careful about making predictions about a child's future. Many doctors we have had felt the need to state "definites" about Patrick even before he had left the hospital after birth. Some said he would never sit or walk or talk. We refused to listen to those doctors who felt they could make such predictions. We stayed with the doctors who were willing to say that they don't know what the extent of Patrick's disabilities will be, and instead said, "We'll have to wait and see—Patrick will show us."

"Definites" destroy hope and hope is our greatest asset. The hope that Patrick would defy the odds and prove the doctors wrong kept us going and gave us time to deal with the fact that he was handicapped and begin to accept it.

Some doctors feel the need to give worst case scenarios, which is certainly not helpful or necessary, and very depressing. We are scared enough of what the future holds for Patrick, let alone be told what may not happen. Patrick has taught us to live for the moment—to take life day by day. It's often all that we can handle anyway!

Try to be kind all the time, but especially when giving bad news. We've been given lots of bad news regarding Patrick. Bad news is a lot easier to take when it is given in a kind and thoughtful way with regard for our feelings.

Before Patrick got his G-tube, it took more than nine hours a day to feed him and give him his meds. I nursed him until he was three and a-half years old just to make sure he got enough fluids. Although eating was difficult, Patrick really enjoyed his food, so it didn't matter to me how long it took to feed him. When it became clear that Patrick would need a G-tube, I was devastated. I felt like I was a failure. Without regard for what I was feeling, one doctor flippantly remarked "Oh, it will make your life much easier. All kids like Patrick end up with G-tubes any way!" She was right about the G-tube making my life easier, but the way she gave me the news crushed me.

When I talk to other parents whose child will be getting a G-tube who are upset, I always remember to acknowledge the disappointment they are feeling that their child will have to be fed through a tube going into their stomach perhaps for the rest of their life.

I also hate when I am told that "All kids like Patrick end up needing a G-tube, or a trach, etc. etc." As I said earlier, it is not fair to any child to make assumptions about what he or she will need, just because they have brain damage or CP or whatever.

Be careful how you label our child. Nothing tore at my heart more than hearing Patrick referred to as "a failure to thrive".

Children are not little adults—and shouldn't be treated as such. After Patrick had his gall bladder removed, it was a struggle to get him back on his G-tube feeds. He couldn't even handle Pedialyte without gagging and choking. Because there is a great risk that Patrick will aspirate when he chokes, the doctors who knew him agreed that he needed to be treated much like a preemie increasing his fluids a few milliliters at a time.

However, one surgical resident had other ideas. She obviously had not read Patrick's chart because she had no clue what was going on with him, or his history, or why he was being fed so slowly, when she arrogantly said to me "You know, when adults have their gall bladder removed, they are fed the same day!" I was shocked, and for one of the few times in my life, left speechless. What does that have to do with Patrick? I should have asked her. How could she compare what Patrick had been through the past few weeks, or his whole life for that matter, with the typical adult patient with gall bladder problems? Her comment was insulting and I wanted nothing more to do with her.

We often get the sense that residents think that a child's medical problems stop when it is bedtime. As most parents quickly learn, nights are usually when illnesses are at their worst. When a child is in pain, you don't want to wait until morning to find out what is wrong. Yet doctors are reluctant to take action during the night. This has happened many times to Patrick and he has ended with some pretty serious illnesses that should have and could have been treated earlier.

We are very insistent that whoever touches Patrick either washes his/her hands or put on gloves. Patrick is very vulnerable to germs and infections. We'll never forget when a doctor came in and began to change the dressing on Patrick's incision. My husband asked him to please wash his hands. Why? The doctor asked. He is my first patient today!

When you care for children with special needs, you are not just dealing with the children but the entire family. Never assume to know what the family is going through because you can't, unless you've gone through it yourself. Families of children with special needs and medical issues are under an enormous amount of stress. As if taking care of Patrick is not hard enough, we must also fight health insurance companies, service agencies and school districts, etc. etc., to get the services and support Patrick and we need.

When I was a special education teacher for more than twenty years, I thought I could understand what it must be like to care for and raise a special child like Patrick and I freely gave parents advice. Not until I had Patrick, however, did I learn that I didn't have a clue what it was like at all. My real education began five and a-half years ago, when Patrick was born.

Encourage the families you see to talk with other families in similar situations. Our most supportive friends are other parents of children with special needs. Most of us are very happy to help another family in the same boat we are. I belong to several support groups. We share information and advice. We laugh together, cry together, and help each other through the hard times. I could not manage without the support of these parents. Only they can truly understand what we are going through.

Don't forget the siblings. Their needs are special also. When Patrick is hospitalized, big brother Peter's first question is "Who is going to take care of me?" Our entire family is affected by Patrick's medical problems, especially Peter. He suffers as much as Patrick. With all the attention Patrick gets, Peter often feels left out. Doctors who make the extra effort to pay attention to him get lots of gold stars. It means the world to him!

We have talked openly about Patrick's disabilities and medical issues with Peter. He knows that Patrick has brain damage that prevents him from doing things the way that others do them. And he is quite involved in helping us figure out ways to help Patrick. A highlight of every school year for Peter is taking Patrick to school and telling his classmates all about him. He is proud to show off Patrick and his special equipment and answer his friend's questions. He tells them that he will always take care of Patrick—that Patrick will live with him because his parents are old!

Peter has seen Patrick surrounded by doctors, rushed into ambulances and sped off to the hospital, struggling to breathe, seizing, hooked up to tubes, stuck with needles. He worries that Patrick will die. It is hard for us to answer all his questions and address his concerns because we too are afraid that Patrick will die, and we don't always know what to say.

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We are very, very grateful for the many people who have taken care of Patrick and who have supported us in so many ways. We are particularly grateful to those very special doctors, nurses, and therapists who go above and beyond the call of duty—who take the time to listen to our concerns and fears, who are there for us any time of the day, and who offer encouragement and admiration.

Patrick has a terrific team of doctors who care for him. They have taken the time to really get to know him and our family. These doctors respect Patrick and us. They never make us feel like we are bothering them. They are kind and gentle. They are reassuring. They let us know that we are not alone in caring for Patrick and handling whatever comes up. It is only with the support of these very special doctors that I am able to care for Patrick.

When Patrick was in extreme pain, his belly distended, his skin yellow, and we were frantic with fear, one doctor spent the entire day and most of the night with us transporting Patrick himself to and from the radiology department for x-rays and cat scans. He then made sure that all of Patrick's doctors were informed of the results and included in deciding what plan of care to take. All this on the eve of a holiday! Patrick may not still be alive nor could we have made it through that day without him!

Some of Patrick's busiest doctors manage to find the time to call and ask how Patrick or we are doing, if a new medication is working, or to give the result of a test. Nothing is more reassuring than to know a doctor really cares. Small gestures or words mean a great deal. A handshake, touch on the shoulder or arm, or a hug mean so much and give us strength. Such "laying on of hands" is as therapeutic for us as it is for our Patrick.

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We wish you luck as you begin this next phase of your medical training and we look forward to working with you!

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