DEALING WITH DOCTORS
If you do not hope, you will not find what is beyond your hope. -- Clement of Alexandria
You Were Worth It All
You were our first child and it was so very exciting
When we found out that you would soon be arriving.
There was much work to do
To get ready for you
And we thanked the Lord for His wonderful blessing.
But when the day came for the ultrasound
We found that our whole world turned upside down.
Some said we should terminate
And not leave it up to fate
They thought we could just bury the past in the ground.
But we were determined to do all that we could
Because being your parents we felt that we should.
There were many amnio-infusions
And two in-vitro operations
Whatever we could do to help you we would.
Finally the day came when you were born
But when you arrived the doctors looked forlorn.
We didn’t hear you cry
Our minds went awry
And we felt like our hearts had been shattered and torn.
They whisked you away before we saw you
They told us that they would do all they could do.
We prayed to our God
Our strength and our rod
For the fear that we felt we never before knew.
Soon they took us to see you in NICU
And our hearts overflowed at the sight of you.
In our eyes you were perfect
You definitely were worth it
And we got to spend 36 wonderful hours with you.
Now that you are gone we have no regrets
Just happy memories we’ll never forget.
We’re proud you’re our son
But your job here is done
We’ll be together again soon but not just yet.
Renee Pierson, mother to Tanner
One mother of a child with severe difficulties noted that every parent of such a child is a pioneer. Every parent is striking out into uncharted territory and discovering things others have not discovered about children with their condition. You must become your child's advocate.
Your doctor and medical team are crucial, but they are human. Some doctors have difficulty seeing patients as individuals, families as unique units, and babies with difficulties as worthwhile humans. They may view you as a "case" rather than a person, thus distancing themselves from you . They want successful outcomes but may consider them impossible in your baby's regard. "Underneath it all, people are primarily afraid of failing. Professionals are not so different from you and me. We're all afraid of the unknown; we're all afraid of failing. Most of us try to avoid situations in which we might be uncomfortable or unsuccessful."
Then, after moving, I had to find a new OB doctor. None of the doctors would accept me as a patient since my baby had anencephaly. They said I’d have to go to a perinatologist in a nearby city. I didn’t want to drive all that way. I didn’t even have a babysitter for my son. Then I found another doctor in the phone book that said high risk and called them. They accepted me right away and he is a wonderful doctor. I’m so thankful to God that I found him (Mary Sue, mom of Luke Daniel who was born with anencephaly)
Take along a tape recorder when you visit your doctor. Tape recording often encourages a doctor to stick to the facts. You can listen to the words over and over, to process them fully and make clearer decisions.
If a physician refuses to allow a tape recorder, consult another physician.
Parents are often given statistics and probabilities. Here are some questions to help make sense of these:
How accurate are these statistics? Is this information based on current data?
Do these numbers pertain to MY child’s exact condition?
What are the numbers based upon? How many individuals were in the study?
Are these statistics for THIS specific hospital and doctor?
What is the experience of the entire team?
What is the timeline of the statistics? Are we talking about survival in the hospital or after discharge?
Who are the top 3-5 experts in this field? How can I find their studies and contact them?
Who is giving me this information and what motivations might he or she have? How is the information being presented?
How often is this condition incorrectly diagnosed?
Is amniocentesis necessary? Will its findings change the treatment options? What are its risks to my baby?
What would you do if this were your child? On what factual information, beliefs, ethical views, professional, and personal experience do you base your view? Have you ever personally faced this dilemma?
If you are told that the pregnancy could become life threatening, ask the following questions and tape record the responses.
What are the life threatening conditions?
What are my chances of developing each one, in percentages? In other words, please tell me that there is a ____% chance of my developing this condition if I continue.
On what do you base the information and percentages?
What would be the signs that the condition you describe is developing?
What would be the signs that this condition has become life threatening?
What is the danger to me of waiting to see if this pregnancy will or will not actually bring me to the brink of death?
Doctors can be casual in unsettling ways. If your doctor calls you by your first name, call her by her first name. It is demeaning to be called Beth if you must call your physician Doctor Green. If your doctor starts to make small talk about your family, make small talk about his family. Being personable goes two ways.
You may also hear any of several authoritative comments.
You have to decide quickly.
Ask: Why? What if we wait?
You need to trust your doctor.
Ask: How many cases like this have you seen? May we speak to other parents who have had children like this? How many babies like this have you delivered? I am going to seek another opinion.
Too much information will be confusing so don't research the condition
Ask: Do you think we are too stupid to understand what we may find out? How could more information be confusing when we are already terribly confused with very little information?
You don't really understand what you are dealing with. You are in denial.
Ask: Are you saying that, because I have hope and because I want to move forward with the pregnancy, that automatically means that I am in denial? Why do you find it hard to believe that we want to give birth to and nurture our child?
My Obstetrician/Gynecologist had been treating me for non-ovulation and had often rebuked me when I would ask her to let me go off the pill just to see what happened. It seemed her attitude was that I should have accepted my infertility and enjoyed my career and sexual freedom. The fact that I was pregnant seemed to annoy her. She estimated I was three months pregnant and took blood to screen for Down syndrome among other conditions. My doctor called to let me know that our baby was going to suffer from severe Down syndrome. She delivered the news in a tone that seemed to say “I told you being fertile and having children was not as wonderful as you thought.” She suggested Michael and I discuss what we "wanted to do". I told her that we would be having our baby. She insisted that we seek counseling in order to “cope.” She also suggested I have an amniocentesis. I said that we would not need an amniocentesis. She certainly made me feel I was making poor decisions. She treated me with a minimum degree of respect. I should have found a doctor that supported our decisions and helped us celebrate our baby’s birth. (Lisa, mom of Brady who was born without Down syndrome)
Your baby is suffering.
Ask: What evidence do you have that our baby is suffering or will suffer? What can be done to alleviate suffering?
Completing the pregnancy will endanger your health.
Ask: What to you mean by "endanger?" What are the odds of my developing that condition? May I see the statistics? What are the signs that I am developing a problem? What can be done if I do? How mild might the problem be? How severe?
Walter and I felt my doctor was just “going through the motions.” We did not feel that he really understood what we were doing. And we also felt that he may be concerned about his own liability. We reassured him that we would not sue him, .that we wanted to give our baby the best chance and that we wanted to have a little time together to collect memories. He softened to some degree, but he just did not seem to fully “get it.” He told us that our baby may not survive childbirth, and he told us “I do not want to do a C-section on you because you already know the outcome. I’m also concerned about the medical risk to you.” After many, many conversations with him and prayers and support from those at hospice, we chose a C-section if our baby’s life was in danger. We wanted to do everything we would have done for our other children. We let my doctor know of our decision. Now he REALLY thought we were crazy!!! He told us he was getting some resistance from some of his colleagues and the hospital staff where I would be delivering. Once again, Mary, director of Pediatric and Bereavement Services at the Hospice, intervened on our behalf. (Donna, mom of Jonathan who was born with Potter's Syndrome)
Completing the pregnancy is emotionally unsound as your grieving will be too intense.
Ask: Is this your opinion or has this been proved by medical research? How can you know how we will grieve?
The baby is going to die anyway so why not end it now and try again?
Ask: Are you telling us that, if our four year old were diagnosed with terminal leukemia, we ought to end his or her life at the time of diagnosis? Would you give this advice if your mother received a diagnosis of terminal cancer?
Your child will never____________ (fill in the blank--go to Harvard, hold a job, have a family, walk, speak, etc.)
Ask: Are you measuring the value of life by what a person can potentially achieve? Are you therefore implying that all people who cannot ___________________(fill in the blank as the doctor did) ought to be terminated? If your child were disabled in a car accident and could never do _____________ (fill in the blank as the doctor did), would you terminate him?
My son Nick was born 12 years ago. I can recall the sounds and smells of the hospital, the look on the faces of the nurses, the dismal prediction of my son’s life given to me by the pediatric neurosurgeon on call, my feelings of hysteria and confusion. His predictions of my son’s quality of life could not have been more dismal if he would have walked up to me with a piece of black construction paper and told me “this is your son’s life”-- how dependant he would be on others, how he could not possibly be able to walk or have any meaningful function of his body, I never, and I mean never, accepted that as fact. I listened carefully to everything I was told, I read every bit of literature about spina bifida I could get my hands on, but I settled within myself that “we would see.” My son has undergone many painful surgeries and, while I would not choose this for my child, this is my son. His life by some standards may not be easy. I would be hard pressed to name someone that had an easy time in their lives, regardless of disability. I’ve learned in twelve years of being Nick’s mom many wonderful lessons. What does my son feel like having a disability? He’s a happy young man. He doesn’t spend his time feeling sorry for himself. I see him pushing himself beyond all limits that others have placed on him. (Ashley, mom of Nick who was born with spina bifida)
Your child will be a burden on society.
Ask: Are you saying that our child is not worth what it would cost to treat him or her?
Your baby may have to endure _____________ (fill in the blank with "a lot of tests and procedures," "mental retardation," "physical disability," "people staring," etc.) so why make him or her suffer?
Ask: Are you saying that there is no medication for these tests and procedures? Are you saying that the benefit of these procedures is negligible because they might cause suffering while they are being done? How do you weigh the value of a procedure against the outcome of improved health? Do you believe that it is better to be dead than to live with mental or physical disability?
At my fourth month prenatal exam, the doctors said, "We see one hand and the left hand looks like it is missing some digits. It does look like she has a thumb, but we don't feel there is any bone in that thumb. This could be caused by amniotic band syndrome which is very common. Fibrous amniotic bands are floating in the uterine fluid, and, if these wrap around a limb or digit, they can restrict blood flow and cause damage." They brought a counselor back in. They did say, "You have options. You can terminate this pregnancy." My husband and I said, "Options? We are talking about a perfectly healthy baby except for a few fingers missing. There are no options here. We will be here to talk with her about it." (Annalee, mom of Brooke who was born with nodules for fingers and a boneless thumb on her left hand)
Your other children will be effected because your baby will never be a real participant in family life.
Ask: How do you know what this child's influence on our other children will be? What proof do you have?
My own children have grown in compassion and understanding from being exposed first hand to Alex's needs, so I do not fear that I am placing a burden on them by bringing Sidney to our family. I feel instead that I am giving them something precious that will help to set them apart in a good way and make them better parents, better friends, and better contributors to society. Giving my kids this valuable experience will teach them to handle adversity in their lives, care better for their own children, face death if need be and know they can survive, and to care for the elderly in their lives better than they could otherwise do. These are things you cannot teach by just telling them. They must experience the rewards of giving of themselves to someone who can give nothing back except love. This is why I want Sidney to live long enough to come home. Because I know that she can help our family be a better family. (Laura, mom of Sidney, who was born with a lethal form of dwarfism)
It will be a financial and emotional drain to care for this child.
Ask: Are you familiar with the financial and emotional status of our family that would cause you to say this?
A high percentages of marriages with a disabled child fail.
Ask: Are you aware that the same number of marriages fail when pregnancy termination is done for disability?
You may not be told that:
Your child with a fatal diagnosis could be born alive and live for a short time after birth.
You can speak with other parents who have borne children with the same condition as your child.
You can receive help from parent support groups.
There are false positives for some of the prenatal tests.
No one can tell with certainty the degree of disability or deformity.
Many doctors have never seen or treated a child with your condition and do not know what to expect.
No one can tell with certainty what your child will be able to do or how long he or she may live.
Menke's Disease is a fatal genetic disease and we were told Nathan would not likely live to see his second birthday. He was very, very small all his life, and at his death (age 14) he weighed only 16 pounds and was only 36 inches long. But this made him portable, very handy since he couldn't walk, anyway, and it made him all the more easy to hold him and love him. :) Despite all these problems, he was the happiest, most sunshiny child you could ever want to meet. His smile caught everyone by the heart, and held them there. (Jennifer, mom of Nathan who was born with Menke's Disease)
There are many parents who have given birth, knowing in advance that their children had this same condition.
Having a child with difficulties strengthens some marriages.
There is absolutely no question that our marriage got stronger. I would go through a period of having a really hard time and Jack would be the strong one and then we would flip flop and it seemed like one of us was always holding the other up. Kelsey was our second child. Megan, our first, helped us stay focused and get out of the hospital and do fun things. We knew we had to have a life for Megan. We have some friends who ended up divorcing but I think a big part of it was the mother. Suddenly the other children were not getting attention and her husband was not getting attention because she was going to travel the world to make her son all better. (Chylene, mom of Kelsey who was born with CMTC syndrome)
MEDICAL LIBRARIES AND ON LINE INFORMATION
You will want to obtain up-to-date information on your child's condition. Your physician may not be able to supply this.
I also telephoned the midwife, and like my uncle, she urges me to continue living normally and to give this baby everything I would give to a healthy child. She gave me a website address on anencephaly. (www.asfhelp.com). I can see for the first time pictures of newborns with anencephaly and the testimonies of the affected parents. This helps me during the following days knowing that I am not alone. People have lived through the same experience, and it is not completely crazy to keep the baby. If the world cannot understand our decision, God does. (Monika, mom of Anouk who was born with anencephaly)
Much information is on line and in medical libraries. Keep searching until you find what you need. Share the information with your medical team.
I found this web site to be very helpful: www.bladderexstrophy.com. Also the book, Living with Bladder Exstrophy, that I ordered through the Bladder Exstrophy website. I found the chat via this website the most helpful. It connected me with others living through a similar experience. I also frequented our local medical library where there was an expert librarian who pulled information from websites and bookmarked medical journals for me to read. Medical libraries can be a big help. Usually the person working there really wants to guide you to the best resources. (Jennifer, mom of Mikey who was born with cloacal exstrophy)
There is a technique to finding information via the internet.
When faced with a poor diagnosis, you want to know all you can about it, and you want to know how to find hope. This is a combination of medical, and technical info. I start with a Google search, because it generally turns up the best medical searches.
To get started, use the common term. For instance, "dwarfism". This will return hits of pages which are geared toward giving basic information. This is also how you find out what the medical term is for a condition or symptom.
If you really want to dig deep, then use the medical term as the search term. For dwarfism, that would be "skeletal dysplasia". This returns hits aimed more at the medical community. It also means you may be buried in technical terms. You can do a search on Google for the term you do not understand (time consuming), or if you can find a page that is in eMedicine.com, you can highlight a word and it pops up a dictionary window with a definition in it. Best though, is to just buy a medical dictionary. They are cheap. Bookmark the pages that you think are worth looking at again.
When a negative prenatal diagnosis is presented, it may only be a collection of featuress. We were told our daughter had short limbs, a constricted rib cage, ventriculomegaly, potential heart abnormalities, and that I had polyhydramnios. These features can be part of several types of short limbed dwarfism, but most are in the "lethal" or "semi-lethal" neonatal types. Because we knew that the condition was a type of skeletal dysplasia, we were able to search on that. But often you have to start with the feature, and learn what conditions might contain that feature.
Even when you know the condition, it is wise to research the features separately. This helps you understand what each one means, and what treatment might be available. It also helps you to understand what else your child might have if the condition was misdiagnosed. Other diagnoses with similar features are called "differential diagnoses". On professional medical pages you will often find differential diagnoses listed, and you can research those also to understand what other conditions are similar. Treatments are offered for some similar conditions. . .
When using a search engine, to get varied information you really have to go 5-10 pages deep. You also need to change your search terms in as many ways as you can think of - we researched "skeletal dysplasia", "curved femur", "bowed femur", "lung hypoplasia", "thanatophoric survival", and other combinations. I wanted to find not just the standard rhetoric, but the few pages that said something just a little different. It is only as you research more deeply that you find examples of the few exceptions, the ones that lived a little longer, the ones that were misdiagnosed, or the times when the condition was not as severe as first thought, or new treatments for less common conditions.
One other source of hopeful information is personal pages. Those are usually buried pretty deep on the search engine pages. These pages, and sites which contain personal stories, are so very encouraging, because they give day to day examples of living with both the diagnosis, and the child, and they contain a range of outcomes. Reading them can help you to face the range of possibilities and to know that if that family could survive it, then you can too, even if you do not want to have to.
Researching can be VERY discouraging. Most medical information available on negative prenatal diagnoses is extremely termination oriented. A lot of the case studies are on aborted fetuses. Much focus is placed on the poor chances, and very little is given on the exceptions or the times when it turns out good. 99% of what you find will depress you. But if you can persevere, and focus on the little bits you find that are good, that 1% that is hopeful may be the difference between you seeing your child as a lost cause, and seeing that there is a chance for them to accomplish something exceptional. In fact, the medical community does not give much attention to the kids who make it. They seem to gloss over that. They say no child with thanatophoric dysplasia ever lived without a respirator, but I found two who did. They say that no child with Trisomy 13 has ever lived past the age of 6 months. I found a child who was two years old with it.
Even though some days were so discouraging as I found only the same negative information, I am so glad I was able to search the net for information, because it provided the few grains of hope that I needed to believe my baby had a chance, no matter how small. And it prepared me to deal with her issues if she can in fact make it. I know what support services she is likely to need, and I know that even though I do not want to have to learn some of what I will need to learn to care for her, that I can face it and do it. (Laura, mom of Sidney who was born with a lethal form of dwarfism/)
Medical journals can supply much information, too. You may be able to research these at your local library and request copies through interlibrary loan. Many medical articles are on line.
For just about every condition there are a number of medical journal articles. Just plug in the subject in the (browser's) search bar. Various articles will come up, and then you just have to dig through them for helpful information. I steer away from websites that are agenda driven or merely devoted to general childhood illness, family medicine, etc. I want websites that give verifiable, reliable MEDICAL information, with sources and references that are well-documented. If I am looking for treatment information, I gather a good number of resources that appear to be reliable and verifiable, and then compare the conclusions and look to see if there is a consensus. I look at credentials and to see if the information is current. I look to see if the information presented seems biased or more of a personal point of view. There is a lot of quackery and medical misinformation presented as truth, and it's important to stay away from that. Use good judgment and care in picking resources and checking documentation. (Jennifer, mom of Nathan who was born with Menke's Disease)
The more you know, the better you can prepare yourself and your medical team for your child.
I worried about the challenges and sort of spent a season lamenting the loss of the dream of a normal child. I admit I didn't want Down syndrome, but I wanted my child, THAT child, and if he had it, then we'd all live with it. We read books about Down syndrome to try and better acquaint ourselves with what our life was more than likely about to become. Basically we just fastened our seatbelts and knew that, come what may, love would find a way. That's what love is. (Ashli, mom of Emmil who was born without Down syndrome)
Search for a doctor who will support you and your baby. Having such a doctor makes all the difference in the world.
When we finally met our fetal cardiologist in person, we immediately sensed that she had a very positive approach. She spoke and behaved as though she wanted our baby to live. We believed that she would find a way to help us. She gave our baby a new diagnosis, HRHS (hypo-plastic right heart syndrome). We were suddenly introduced to the world of chambers and valves and spontaneously produced pencil sketches of our baby's abnormal heart. The diagnosis was easier to take this time around because we had a plan to pursue. Soon after birth, our baby would have the first of three open heart surgeries that would allow her heart to function with only one working ventricle. (Monica, mom of Celine who was born with hypo-plastic right heart syndrome)
I spoke with the pediatrician. He treated me like a rational intelligent human being, and discussed potential issues and treatments. He had no problem with our wishes to give our daughter the tools she needed to survive, without forcing her to survive, if she could. He was the first doctor who was willing to look at more than just the diagnosis and actually assess her as an individual. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
You may have to educate your doctor and hospital staff. Your doctor may never have delivered a child with your child's condition.
My obstetrician had never delivered a baby like this. My baby and I were going to be pioneers - and we needed to teach the professionals how to do this. My local hospital had never dealt with a case like this. My obstetrician told me to write up a birth plan which I did after much research. Several weeks later, my obstetrician got the amnio results confirming full Trisomy 18. He told me that he knew we were dealing with "only one patient now". He also said that we would have a regular delivery instead of a C-section. (Before Grace was diagnosed, my previous children were C-sections and she was going to be one, too). Also he said it wasn't important to monitor her. I left the office feeling uneasy. I called a "pro-life doctor". I told him I wanted to switch to him. He was friends with my OB, and told me that he would talk to my OB and to give him another chance. During the next visit I grabbed the doctor by the shoulders and said, "Look, if you don't see me and my baby as 2 patients -I can't work with you!" He said, "I know, I know, I talked with Dr. S. and he told me that you called him. I understand. All you want is to hold your baby for 5 minutes. You tell me what you want and I'll do it." From that point on, all the decisions revolved around maximizing the chance of having a live baby. My OB told me he will never be the same. Grace had a profound impact on the doctors that worked with us. My OB took my birth plan and distributed it to all of the nursery/ob staff and had meetings with them to plan the delivery. I met personally with the Head Nurse of Labor and Delivery as well as with the Head Nurse of the Nursery, Neonatalogist and VP of the Hospital. Much planning went into Grace's arrival. As the nurses told me, "Chris, there wasn't a protocol written to do this kind of thing. You wrote the protocol." (Christine, mom of Grace Ann who was born with Trisomy 18)
 Snow, Kathie. Disability Is Natural. Woodland Park, Colorado: BraveHeart Press, 2001, p. 74.
 Information on dealing with statistics is condensed from "Life and Death Decisions" by Debbie Hilton-Kamm, www.benotafraid.net/article.asp?id=19. Debbie's son Braedon was born with hypoplastic left heart syndrome.
 Alex had leukemia.