Research--Caution
January 23, 1999
Dear Parents and Friends of the Heart,
I think that Spencer's post regarding research on developmental issues of
children with congenital heart defects is relevent and interesting. This is
an area of concern we all share and we need to have reliable information in
order to draw any kind of conclusions. I want to publicly thank Spencer for
taking the time to provide the URLs to the research he addressed in his note.
One of the best things about being on the Internet is the availability of
information which might otherwise be difficult to come by.
With that said, I must again caution parents about the research that is
available with regard to our children. First of all, there is a great need
for the very research we are discussing. I want to know what I should be
prepared for regarding my 'heart' child's future. I want to know if I might
need to take my child to therapy of some kind to facilitate growth and
development. I am just not certain that some of the research that has been
done thus far can give us those kinds of answers.
Common sense would dictate that any child who has had open heart surgery,
anesthesia, possible complications, etc. would be at greater risk for having
developmental and neurological problems. I know that some people EXPECT for
there to be neurological and developmental problems simply because of the
amount of trauma the children have to endure in having either a heart
transplant or the Norwood Procedure. Fortunately for our children, the human
brain and the body are able to endure great insult/injury and yet, after time,
patience and education these bodies and brains are often performing within
normal limits. In other words, the way the human brain works is still a great
mystery.
I feel I simply must warn parents about reading too much into studies
which do little more than provide anecdotal information. I can see where it
would
be very easy to become upset after reading some of this research. When I did
extensive research on HLHS for the book I wrote, I was often distressed. The
one thing I noticed with the HLHS research I found, though, was that the
statistics were always changing. Luckily for us, the statistics improved
greatly from one year to the next. There is a tremendous difference in
outcome for the children who had open-heart surgery in the mid-1980s versus
the children who had surgery in the 1990s.
Please keep a critical eye open when reading the research. Just as an
example, let's look at the two studies mentioned earlier. I have grave
concerns over both of these studies.
J Child Neurol 1996 Jan;1 1(1):49-53
Outcome after open-heart surgery in infants and children
This study was done at the Baylor College of Medicine in Houston, Texas.
Do not be fooled by the date the study was published. The children this study
examines had their open-heart surgery between 1987 and 1989. The researchers
studied the neurodevelopmental outcome of 104 consecutive unselected children.
They conducted neurologic and psychometric examinations on the survivors after
they were two years old.
I have a lot of problems just with the design of this study, but I won't
go into all of that now. What I will say is that the children this study
examines had their open-heart surgery 10-12 years ago. Think about how far
the field of pediatric cardiology has come in the last decade! There are new
drugs available, pediatric cardiac bypass is much more common, there are new
materials available for surgeons which yield better results, there are even
totally new surgical procedures which have been created in order to help our
children! Pediatric cardiology a decade ago was a different animal all
together than what it is today.
The study purports that the HLHS survivors had an IQ of only 66 and that
57% had cerebral palsy. Those numbers are frightening! Are those numbers
representative of the entire population of HLHS children? NO. These are the
figures of ONE study done at ONE facility over the course of two years. I
strongly question the validity of this study. One thing that has me curious
is if there is any baseline information on whether or not any of these
children were identified as having cerebral palsy before their open-heart
surgery (the abstract gives me no clue on this).
And then there is the question about intelligence testing. Intelligence
testing is a HUGE Pandora's Box better left for another post. Suffice it to
say that I place little to no value on testing which is supposed to measure a
quality/characteristic that defies definition. Entire books have been written
on this very subject.
Pediatrics 1998 Nov;102(5):1148-52
Early developmental outcome after the Norwood procedure for hypoplastic left
heart syndrome.
This study was conducted at Columbia-Presbyterian Medical Center in New
York.
The study is comprised of 14 children with HLHS who had had at least two
stages of the Norwood procedure. They, too, had IQ testing and their parents
were interviewed regarding their children's adaptive behavior. The children
were compared with 10 family controls.
The results of this study were that all of the children but one had IQ
scores
and adaptive behavior in low-normal limits. One child met the criteria for
mental retardation. The researchers suggest that prolonged circulatory arrest
time may result in decreased intellectual function.
First of all, there is a need for research such as this in order to
determine
what the doctors can do in the hospital to safeguard the child's health and
well-being after surgery is completed. I think that it is wise to examine
certain variables (such as circulatory arrest time) so that surgeons
understand the importance of performing their surgeries in an expedient
manner. It is also important for parents to be aware that if their child is
in the operating room for longer than a certain length of time, additional
injury can occur. Forewarned is forearmed. Armed with this kind of
information, parents and doctors can observe a child's behavior and determine
at an appropriate time if early intervention is warranted.
But, I also have a problem with this study. First of all, this is a very
small study. The information that this study provides is anecdotal at best.
One cannot make a generalization based on the results of this study. This
study is unusual in that the controls were family members. Unless all of the
controls were twins, the children being compared are of different ages. The
controls are heart-healthy children who have probably not been hospitalized
before. The parents were asked to compare their heart-healthy children to
their HLHS children as a means of comparison. Is it not common for siblings
to be very different in personality, behavior and development even in totally
healthy families? How can you really assign any kind of control to a group of
HLHS children? I daresay you cannot.
We need longitudinal research which follows children from diagnosis to
adulthood. We need a study which compares children across the country (at
least!) and not from one lone clinic or hospital. We need research that does
not simply depend on IQ tests as a means of determining neurological
development. There should be other methods of testing employed, methods which
are more accurate and quantitative. Testing should be conducted periodically
throughout the child's life. Yes, some children may be delayed or even
deviant at certain times in their lives, but the big question is whether these
children can overcome these differences as they grow.
What concerns me most with this kind of research is that it could unfairly
bias parents into thinking that HLHS children suffer a less ideal quality of
life than a heart-healthy child. Some of the people on this list are parents
awaiting the birth of their HLHS child. I would hate for research like this
to make them even more anxious about their child's quality of life. I do
believe there is value in knowing what may lie ahead, but I also believe that
we need much better research to provide us with those answers.
A certain percentage of the population at large is 'special.' There is a
percentage of children who may be otherwise perfectly healthy, but who may be
delayed in speech or motor development. Even if our HLHS children did not
have a heart defect, the chances are that some of these children would have
been delayed anyway. Luckily for us, we have many doctors who will be
assessing our children's strengths and weaknesses and helping us to find
others to help our children have a bright future.
I just wanted to also say that I know our children's surgeons are very much
aware of the need to get the children in and out of surgery as quickly as
possible. There is enough research which has been conducted on adults to show
that the longer their chests are open, the greater the risk for additional
complications. I do feel that research which looks at individual variables is
warranted, though, so that we better understand as much about the human body
as possible.
I hope this post was taken in the manner it was intended--as one concerned
parent to many others. I hope that we parents continue to take the time to
share information and to help each other understand as best we can. I also
hope that as many of us as possible agree to take part in good studies. I
would love to conduct some research in the area of HLHS sometime in the
future. I hope that if I do, I can call of some of you to share your wealth
of information with me.
Sincerely,
Anna Jaworski
mom to Joey (7) and Alex (4; HLHS)
author of
"Hypoplastic Left Heart Syndrome: A Handbook for Parents"
and
"My Brother Needs an Operation"
(available spring of 1999) and
editor of
"The Heart of a Mother"
(available spring of 1999)
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