Few of us are really tested to the core. None of us want to be.

When receiving a severe diagnosis for our child, our worlds change. Our lives take a turn that will forever be different than we had envisioned or hoped for - regardless of the outcome.

When getting a severe diagnosis for our child, we find ourselves in a turmoil of emotions: 

• Disbelief - How can this possibly be? This isn’t supposed to happen. 
  
• Grief for the loss of the “healthy” child we envisioned, grief for the end of the carefree pregnancy, sadness that the normal joys of taking care of a baby will be burdened by concerns of his health
  
• Anger – Why did this happen to me? It isn’t fair.
  
• Guilt – Did I do something to cause this? Am I being punished?
  
• Fear – What will happen to my baby? What will happen to me? Can I handle this?

Just how do we as parents make gut-wrenching decisions about the life and death of our child? How can we possibly know what is the best thing to do? These are decisions that no parent should have to make – but many of us do.

PLAYING BY (AND WITH) THE NUMBERS

Even in the midst of the shock of a difficult diagnosis, parents are often given a myriad of probabilities and statistics: the probability of the child’s survival, the rate of complications, and the possibility of long-term consequences. Suddenly, this new life is boiled down to a mathematical equation representing the child’s chances at life, or his potential “quality of life.”

As distasteful as this seems, the numbers can be a helpful guide in determining what actions to take. They can help us find the best treatments available and medical professionals to care for the child. Parents need to weed through the information given to them and understand exactly what the numbers mean, even as they deal with their torrent of emotions.

Below are several considerations to help make sense of numerical data.

How accurate are these statistics?
Is this information based upon current data? Depending upon the diagnosis, even a few years’ time can make a huge difference in the expected outcome for your baby. Make sure you are getting the most recent data possible.

Do these numbers pertain to MY child’s exact condition?
Very often, statistics are quoted for an “average” case within a certain diagnosis – make sure that they pertain to your situation. If your child has a more severe form of the diagnosis, try to get information specific to that condition. And, remember that if your child has a less severe condition, then the statistics may be more favorable for your child.

What are the numbers based upon?
Is this information based upon a large enough number of patients to make it meaningful? If the diagnosis is particularly rare, or the medical professionals have little experience with it, the outcome may not be known. Also, if looking at the statistics for certain treatments, understand that a hospital can boast a 100% success rate for a certain procedure, even if they have dealt with only one case and the baby happened to do well. However, a more experienced hospital may show a lower success rate simply because they have dealt with many more cases, or more severe cases. So, not only the total success rate is important, but also the number of cases that the hospital handles annually.

Are these statistics for THIS specific hospital and doctor?
When comparing hospitals for subsequent treatment, you need to know the experience level of the specific hospital and the specific physician you are considering. A success rate that is based on a conglomeration of all hospitals may be very low since it includes hospitals with little or no experience with this condition. Likewise, an average of only the most experienced hospitals will give a much different number. If you are trying to determine the best place for treatment, make sure you get information specific to each hospital and physician you are considering. A new doctor, for example, could quote the hospital’s success rate for a certain procedure, even though he has had little direct experience with the condition.

What is the experience of the entire team?
Often, we think only of the doctors as the ones who can save our children. The reality is the outcome of most medical conditions is dependent upon many medical professionals. For example, a child undergoing heart surgery will not only need an experienced surgeon, but it is important to know about the experience level of the anesthesiologists, cardiologists, nurses, radiologists, lab technicians, and many other professionals since they will all come into contact with the child. They all need to work together as a team. Ask how long the team has worked together, how they communicate with each other, etc. You can also ask for a list of all medical professionals who would come into contact with your child, so that you can research their experience. Some parents, for example, are hesitant to go to a teaching hospital if residents (physicians in training) will be partly responsible for their child’s care. Other parents like the atmosphere of a University or teaching hospital.

What is the timeline of the statistics?
When given a statistic such as a “survival rate” find out what the timeline is to which it refers. Some hospital’s survival rates refer to “hospital survival” – including those children who survived until he or she was discharged. Some survival rates refer to longer periods of time - 5, 10, 20 years, etc. The difference in survival between the two timelines can vary tremendously, and may make one hospital’s survival rate look much better than another. If you are deciding between different hospitals for treatment, you need to make sure you are comparing “apples to apples.”

Who are the top 3-5 experts in this field?
Even if it’s not possible to get to one of the experts for treatment, it is imperative to know who they are, read their research, and contact them to learn what is POSSIBLE for a child with your child’s condition. They can be a valuable source of information and may point you in the right direction for treatment and support. Sometimes, the experts in a specific field are much more positive about the outcomes for children because they have more experience and they know what is possible. They may also know about alternative treatments or new treatments being developed which could be beneficial.

Who is giving me this information and what motivations might he or she have?
We often assume that when we are given information on a serious condition that everyone has our best interests in mind. That is not always the case. You need to understand the person’s knowledge level of the condition, experience with it, and his or her motivations. It may be that they do not have firsthand experience with the condition, in which case, the information may not be accurate. In addition, medical professionals have a very tough job and are often pressured between the insurance companies and the hospitals to refer to certain specialists, or recommend a certain course of action, which may not be the only or best alternative. It is best to speak with several physicians to get different perspectives.

How often is this condition incorrectly diagnosed?
A good physician should acknowledge that not all diagnoses - especially those done in utero - are correct. Not all diagnoses can be accurately pinpointed during pregnancy, and sometimes the diagnosis may present as better or worse than originally thought once the baby is born. Since many parents choose to terminate the pregnancy once receiving a severe diagnosis, we may never know the true accuracy rate of many diagnoses made during pregnancy.

Is amniocentesis necessary?
An amniocentesis can give important genetic information. But, before consenting to one based upon the baby’s diagnosis, ask if the outcome would change the treatment options. If it would not, make sure you understand the risk of miscarriage associated with an amniocentesis. If you would not change the course of treatment, you may not want to subject your baby to the risk of this procedure.


BEYOND THE NUMBERS

As if weeding through all of the statistics, probabilities and success rates weren’t enough… many other factors need to be considered. The accuracy of the source of information is a major factor to consider.

The Internet - the good, the bad, and the ugly…
The internet is an amazing source of medical journals, support groups, personal websites, and informative articles from hospitals and other medical organizations. Never before have consumers had medical information at their fingertips as they now do. In addition to information, it is now often possible for parents to reach experts in the field for more information, as well as other families who have faced a similar situation.

Unfortunately, the internet also has several drawbacks. Searches often result in haphazard results, and the most relevant, recent, and accurate information is not easily identifiable. Almost anyone now can create a flashy, professional-looking website with no guarantees of the accuracy of the information. On the flip side, many reputable sources of medical information may not have a website, or may not have the relevant information listed on the website. Many otherwise reputable sources of medical information have been known to post extremely outdated and inaccurate information. This can occur for a variety of reasons, but for the parent looking for positive, helpful information, this can be extremely discouraging.

The internet has also given people a wonderful way of creating tributes to loved ones they have lost. However, when researching a certain diagnosis, it is sometimes easy to get overwhelmed by these personal memorial sites. It can often appear that the mortality rate is much higher than it is in reality, since these sites are often more prevalent than for those of survivors. The fact is - most parents whose children do well are too busy taking care of them to create positive websites detailing their success. Viewing these personal websites can give a negatively skewed perspective of the condition that may not reflect the overall survival rate.

How information is presented:
Doctors often present the diagnosis in the worst case scenario –sometimes to make sure the parents understand the serious nature of the problem, sometimes to make sure they don’t give “false hope,” and perhaps sometimes in an effort to ward off future lawsuits. The result is that sometimes parents aren’t told that there IS hope, that there IS a chance of their child surviving or doing well.

How the information is presented to us initially can greatly impact our views. As Dr. Roger Mee, a well-known pediatric heart surgeon illustrates in the book, Walk on Water: Inside an Elite Pediatric Unit by Michael Ruhlman, even the same information can be presented in different ways. He illustrates this point by mimicking two doctors giving parents information on survival rates for their child:
“There’s a 50% chance we can get your kid through.” Roger (Mee) nodded and spoke these words with an upbeat tone and a smile. Then, his lips curled inward, his brow furrowed, and he said, “There’s a 50% chance your child will die.” Reverting to himself, he stated the obvious: “It’s the same information.”

But, this “same information” most likely would be perceived completely differently by the parents hearing those words. Doctors have a very strong impact on parents’ impression of the risk – especially if it is given at the initial diagnosis when the parents are highly emotional. This is why speaking with several doctors can help parents learn of different opinions and different approaches to the condition.

“What would you do if this was your child?”
Many parents feel that the quintessential question to ask the doctor is “What would you do if this were your child?” But what does this mean? Unless you understand what the physician is basing the answer on – what factual information, what personal and professional experience, what beliefs he or she holds about the condition, and what moral/ethical framework he or she holds – then the answer is irrelevant.

And, unless the doctor has actually personally faced this dilemma, it is merely a hypothetical question for him. How many of us have sworn that we “would never” do this or that, only to find when actually faced with the situation, our decision was often different than our initial bold declarations? A theoretical answer to this question does not reflect the reality of actually having a baby kicking within, or holding a child that you’ve given birth to, and deciding what to do with his or her life.

Understanding and interpreting the information:
Our expectations can greatly impact how we take in information. Often, we hear and remember information that is congruent with what we already know or believe while we disregard any information that we don’t expect, don’t understand, or don’t want to believe. Therefore, two people’s interpretations of the same information can be quite different. For example, a husband and wife can leave the same consultation, one hearing and remembering mostly negative information, the other, more positive.

Because of all of these factors, understanding the information may take some time to weed through as we also weed through our myriad of emotions. If possible, take the time to get the information from different sources, absorb it, talk about it with your spouse or other family and friends, and ask a lot of questions before making any decisions.

MAKING THE DECISION

After the initial shock of the diagnosis and researching our options, we eventually need to face the burden of the decision-making regarding the life of our child. It’s perfectly understandable for us to want the problem to go away, and to go on with life as though this episode never happened. The problem is – it will never go away in our hearts or minds. Regardless of our choices or of the outcome, the truth is that our lives changed forever the moment we received the devastating news.

It is up to us to decide if we will accept our situation and be open to the benefits of it. Yes, benefits.

The irony of life is that often those who have faced the most difficult challenges learn to appreciate life the most. And, those who have faced the depths of despair often learn to find joy in even the simplest things.

Only those who actually have chosen the more difficult road – to give birth to a child with a serious medical condition - can attest to the increased appreciation for life. We realize that we can learn immensely from our child, no matter how brief his life may be.

For most of us, confronting the unknown and facing those things over which we have no control makes us fearful. But courage is not facing obstacles without fear – it is facing obstacles DESPITE our fears. Knowing we did everything possible for our child regardless of the outcome can give us a great sense of peace and relieve us of the “what ifs” that could haunt us in the future. We can realize strength within us that we never knew existed.

People often argue that siblings should not be burdened by a child with medical or other special needs. But, what do we teach our children if we choose the most expedient way for ourselves? What would our children learn about compassion, commitment, honoring life and valuing each other if we chose to make sacrifices for the life of another human being?

The decision to carry to term a child with a serious medical condition is not an easy one. It is up to us to research the available information, search within ourselves for our convictions, and decide what choice we can ultimately live with.