 |
|
Parents and ACHD’ers Speak Out!
Chat Date: 4/1/98
- Questions asked by:
- Richard Donner, M.D.
- Pediatric Cardiologist
- The Children's Hospital of Philadelphia
- Philadelphia, PA
- Robert Pierce, M.D.
- Children's Heart Network
- University of Texas Health Science Center at San Antonio
- San Antonio, TX
- Elizabeth Tong, MS, RN, CPNP,
- FAAN
- Clinical Nurse Specialist
- The Medical Center at the University of California
- San Francisco, CA
- Alan D. Tong, M.D., FACC
- Pediatric Cardiologist
- Cedars-Sinai Medical Center
- Los Angeles, CA
Edited by: Mona Barmash
- Q. As a parent of a child with CHD or an adult with CHD, what are the circumstances, events, etc. that cause you the most anxiety?
- A. The thing that causes the most anxiety to me, is not being in control of the situation, having to turn the care of my child over to someone else.
- A. Surgery is the worst.
- A. Leaving my son without a mother.
- A. My answer is trying to figure out if anything abnormal about him is contributed to his heart defect.
- A. What is stressful is that a lot of answers are still "I don't know".
- A. The stress of not knowing from checkup to checkup
- A. Not being able to get to a doctor who is familiar with CHD in adults in case of an emergency.
- A. I think surgeries and the few days leading up to a pc visit are definitely most
difficult. Even more stressful is when I am not respected by the doctors that I'm working with.
- A. I think it is very stressful to have a doctor talk "down" to you as if everything might be over your head.
- A. It is also stressful when you go to your local hospital and they don't understand what is wrong with your child.
- A. If people assume that I am not on a level playing field (and this has been infrequent in my experience), then I am distressed.
- A. Stress is when you know more about your condition than the ER doc working on you!
- A. Surgery has to be the worst. Just the thought of another heart surgery makes us fearful.
- A. I am afraid for my child when the ER docs are afraid of him.
- A. Our experience with hospital stress wouldn't have been as bad if we were told what might have to be done if the procedure which they were trying did not work. We just went from test to test, and never knew what the doctors were really thinking.
- Q. What has been the most helpful thing health professionals have done for you?
- A. Taking the time to explain things and listen openly to all questions.
- A. Explain things to the child also.
- A. The most helpful thing is when the doctors take the time to explain until you really understand what is going on.
- A. If a doctor goes out of his way to make sure everything goes smoothly, if he can make it happen.
- A. The most helpful thing a Dr. can do for us is not only treat the "disease", but also the person / the family.
- A. We found a surgeon who spoke to our teen-aged son with respect, like he's part of the decision making process, which he is!
- A. The most helpful thing has been when doctors and medical practitioners allow me to be a part of the decision making process.
- A. I really appreciate when our doctors admit they don't know, and they get on the phone or the Internet and try to find some answers, instead of giving us some verbal runaround.
- A. I respect a doctor more when they admit they may not know the answer, and refer me to another source.
- Q. Do you feel you need to have information repeated several times?
- A. Sometimes. It is really overwhelming, especially the first time you hear all that.
- A. I always take notes, and have my questions written in a book so as not to repeat questions too often. Diagrams also help a lot.
- Q. For those of you whose child had a severe heart problem (HLHS or similar), how was the information first presented to you? Could it have been made easier, or clearer?
- A. We were given very little info when our child was born- and I could not find much on my own either.
- A. We needed more details on upcoming things.
- A. I was baptized by fire. Our child was very sick by the time he was diagnosed.
- A. We depended totally on our PC for information.
- A. I got the "news" at 2 AM after being in labor for 12 hours.
- A. Our daughter was in severe failure before we actually found out all that was wrong.
- A. We were told when he was four days old. The doctor did it as well as could be expected, but we had to watch them do an echo for 45 minutes while they told us something was terribly wrong, but did not want to tell us everything until they knew
the details. The waiting was awful.
- A. We were very misguided by our first PC. He gave us terrible advice.
- A. I was told during labor by a neonatologist that our baby would not live through delivery.
- A. We were told our baby was inoperable and nothing could be done.
- A. My son was diagnosed with a number of things. I found that over time, the explanations got more sophisticated, but I also felt that I would have been given less than adequate info if I had not combed the internet two days prior to my first fetal echo.
- A. I was told by a Perinatologist to abort my pregnancy.
- A. I found out when I was 20 weeks pregnant. Everything predicted at that time was true. I am so glad I knew so we could prepare.
- A. When they finally did give us the information, it was presented in a simple diagram, and we were told the three options. We were told in the middle of the NICU, however, in front of everyone.
- A. We got a diagnosis, but no answers on what would be done.
- A. Our diagnosis went from bad to worse, but thank goodness, we got a second opinion.
- A. We found out when she was twelve hours old. They were more interested in her physcial features at the time.
- A. My first question after I found out about my son’s defects was "is it operable?", and the pc made it clear that everything in their power would be done. Never was it mentioned that he was inoperable, or that I should just let him go.
- Q. Does it help or make it more overwhelming to be told that you probably will know your child best and become the expert?
- A. ALWAYS use your "moms" intuition.
- A. Sometimes I feel like we know more than the doctors.
- A. Mom's intuition is very important.
- A. It helps!
- A. I think it is very helpful because it is true. No one will ever know your child like you do.
- A. A good pc will respect what you have to say.
- A. At first, it is hard to believe that you do know your child best, but as the child gets older, you find you really do.
- A. It gives us credit.
- A. It helps as long as the professionals realize that what we say about our children has value.
- Q. When you are told to treat your child as "normal" - is that a hard concept to understand and to do? What would make it easier?
- A. At first I was very scared to have my son home without a sat monitor, but the docs pounded into my head to look at him, and to know from looking at him when something was wrong.
- A. Normal is a hard concept when the chd baby is your first child.
- A. It's hard to know what "normal" is, especially if it's your first child.
- A. I think it is initially daunting, but then if that is really meant, and the medical workers do give you credit for your insight into your child, it empowers you in a very important way. What is so frustrating is the small amount of power, knowing that you are given the charge of watching over your child is awesome.
- A. It's pretty easy to treat them normally - but you will always treat them differently.
- A. I have always treated my daughter with as much normalcy as I can muster.
- A. As a first time mom, I have nothing to compare it to. I don't know if I would treat a "normal" child differently.
- A. I find it hardest to treat my son normally when he is playing sports.
- A. We have always tried to treat our daughter as normally as possible, however, its hard not to spoil her.
- A. I still find it hard after 13 years to treat my son the same as my other children.
- A. "Normal" is relative... I think it's more appropriate to treat your child as an emerging individual. When you have more than one child, you don't treat them the "same". Each child requires different techniques and handling.
- Q. How can health professionals make it less stressful, overwhelming, awesome?
- A. Take time to talk to us and not above us.
- A. Be more empathetic.
- A. Take time to be a friend to us and to our child; listen.
- A. It is a stressful, overwhelming thing. I'm not sure that anyone can change that.
- A. I think we need parameters. It is a comfort to me to know how many respirations are too many, heart rate, etc. I need the guidelines of when to worry.
- A. I don't think a professional can ease the burden.
- A. Give examples of what other kids with similar conditions can do and have done.
- A. Doctors that have no clue what to do with us should admit it, and send us to someone else immediately, and not treat us like normal adult hearts with problems.
- A. Explain everything so the patient or parent can understand.
- A. As an adult with toF, I am amazed at the cardiologists who have no idea what CHD means to treatment and care.
- A. My pc is great about checking back with our hospital and ensuring good communication with our child’s pediatrician. To me this is critical.
- Q. Many of you have stated that we should explain things so you understand - do you feel comfortable stopping someone when you don't understand?
- A. I do now, but not at first.
- A. Yes. I do it often.
- A. Yes I do, all the time.
- A. Yes, I stop the doctor and say "wait a minute...".
- A. I’m getting better at that.
- A. Yes, me too.
- A. Some doctors are great about it. Others seem annoyed, but I really don't care. It is critical that I understand for my child’s sake.
- A. If I don’t understand the docs, I tell them to start over, and they do.
- A. Yes, I will keep asking questions until I understand.
- A. I find one of the difficulties with managed care and dollar issues, is that for the most part, we don't get enough time to ask all we need.
- A. I do it for my son's benefit even if I understand - because he's 12 and starting to hear for himself.
- Q. Who do you turn to for practical advice?
- A. The PC.
- A. The PDHeart support group is the best advice!
- A. For practical advice, I use the PDHeart group!
- A. I think other heart parents are a great source of comfort.
- A. I turn to the Noonan’s Support Group.
- A. I turn to my pc, and when my child was younger, I talked to the nurses since we were at the hospital so much.
- A. PDHeart is definitely my way station for support, and I turn to other close friends I have made through running my group.
- A. My best source of support has ALWAYS been other parents.
- A. I rush home from work just to be on this chat!
- Q. With regard to time for questions - does it help to have a list?
- A. Definitely.
- A. Yes.
- A. It is definitely important to have a list.
- A. Yes!
- A. Our surgeon answered every one of my 50 questions!
- A. I have a marvelous pc who answers all of my questions - but in the context of normal office visits, there is never enough time.
- A. I think that it is harder to ask the questions we want when the older child is sitting next to us.
- A. You can get very disoriented when you meet with the docs, and often forget things you want to ask, especially when they bring in the interns when you are not expecting extra people around.
- Q. Do you find it confusing to get information from so many sources - other parents, the net, doctors, television?
- A. No, because you learn who you can trust and who to listen to.
- A. No way. The more info the better-I can sort through it.
- A. No, because you can get more of a "consensus" of opinions.
- A. Sometimes the information conflicts. I ultimately go with what my pc, pediatrician and hospital have to say.
- A. I never feel confused by too much information. I feel confounded by too little.
- A. No way. I take it all in, and then go back to my "moms intuition" again.
- A. It can be overwhelming at first, but it gets better once I can understand and put the information into perspective.
- A. I don't find it confusing. I take it all in, and then go back to my doctor who I trust.
- A. I think the more I know, the better.
- A. Not really. I always take what works for me, and discard what doesn't. And if there are questions raised by others, then I check it out.
- A. I have noticed that my baby's surgeon always asks me many questions now, for he knows how informed I am.
- A. We've all seen examples on the mailing lists where parents were not getting adequate information, so really, an overload of information is more desirable than too little.
- A. For very new parents, I think the information has to come gradually, and that's why it should be the first job of pc’s everywhere to actively educate the parents.
- A. I think there is over-concern about "scaring" parents with too much information. In reality, most reasonably minded people want to know both worst and best case scenarios, and everything in between.
- A. Information is one of our best weapons, and it's important for our children too. My son knows everything - going into surgery in 2 weeks.
- A. I sensed that my pc was "feeling us out" if we could handle info in the very beginning.
- A. I have found so much information on the internet.
- A. Well, I feel when the child is not informed, he/she will be under added stress, worrying about things that may or may not happen to them. It is best for them to know the facts and help them deal with it.
- Q. How do you know whom to trust?
- A. I go with my gut feeling.
- A. My PC is always my first source.
- A. We trust the lord.
- A. I trust the people who see my son regularly. Every heart kid is different. They know his heart, and we work as a team.
- A. Time and experience tells me who to trust.
- A. I trust my doc, but the final decision is up to God.
- A. We changed PC's recently - it was interesting to get a different perspective.
- A. I trust my surgeon and PC, or else I wouldn't be going to them
- Q. For those of you with older children, how do you explain their surgical scars, or activity restrictions ? What works best?
- A. It's a gradual education.
- A. There's really no reason to explain - my son has always had the scars, has grown up with them. For each age, different things are appropriate.
- A. I think it starts at the very beginning- our kids get more curious as they get older.
- A. I explained what was done to my son, and he really hasn't started asking too many questions.
- A. It's progressive. Just part of their lives.
- A. Our son is 8, and does not seem to even think about his scars. He is very matter-of-fact about them. They are a part of him.
- A. You know your own child, and when they need more information.
- A. Mine knows. He says his surgeon fixed his heart, he looks at pictures of himself in the hospital.
- A. I am always showing my son pictures of himself in the hospital and pictures of his doctor. I want him to know about his past.
- A. I have always been informed from the time when I was as young as I could understand. My parents were very open and honest about my situation.
- Q Would it help parents to have a booklet about how to raise children, deal with insensitive comments, questions?
- A. Yes
- A. Yes!
- A. Yes.
- A. Yes, but that booklet needs to be written not only by doctors, but by other parents as well.
- A. And patients!
- A. There are some "opposite sides of the bed here", and doctors and patients need to address that together.
- Q. What suggestions do you have for doctors with regard to "bedside manner"?
- A. Be open and friendly, understanding, and listen to questions openly.
- A. Treat the parents as intelligently as you can, explain, explain, explain, and be patient while they let things sink in.
- A. Be informative, human and receptive.
- A. Come down to the "layman’s" level.
- A. Explain patiently to us. When the news is bad, be sensitive to our privacy and emotions. Don't give us bad news in public.
- A. Don't make assumption about parents. Some are just in shock.
- A. Bedside manner should be extended to the child also, especially when they are old enough to understand that things are bad and parents are upset.
- A. Don't assume that parents are all the same. For every parent, you have a different personality type. Bedside manner is significantly improved when the doctors deal with you as an individual.
A. I, for one, resent being called "mom", or being referred to as a generic "we". It takes away my personality and makes me feel like I'm part of a cattle call.
- Q. Would anything (in your experience) have made the situation of finding out about your child’s diagnosis better?
- A. Telling it with compassion, understanding that we won't absorb everything at once.
- A. Sympathy and understanding; better explanations.
- A. I think every doctor should inform the patient/parent that with severe cases, a second opinion is recommended.
- A. Bad news is bad news. Just be as kind and sympathetic as possible.
- A. Tell parents as soon as possible! Nurses told me only because I asked.
- A. I have heard more than one story where a physician attempted to argue strongly in favor of choosing compassionate care. Presenting the options is important. Forcing opinions or moral views on a parent is unacceptable.
- Q. How many of you belong to a support group?
- A. PDHeart list.
- A. I do.
- A. PDHeart.
- A. ACHD listserv.
- A. I belong to three.
- A. I did until I moved - now just PDHeart.
- A. I belong to the Noonan Support Group, and just joined the PDHeart list.
- A. PDHeart and ACHD.
- A. ACHD listserv.
- A. I just use the HLHS listserv.
- A. PDHeart, and I helped start one with our Children's Hospital.
- Q. For those of you who belong to a support group, what keeps your interest?
- A. Helping other people.
- A. Being with people who understand.
- A. Being able to give back some of the support I've gotten!
- A. The information and answers to questions -a place to vent, too.
- A. Commonality, empathy, community, and definitely helping others!
- A. Finding children with the same diagnosis as my child.
- A. Knowing that there are others out there who have the same fears and hopes as I, and being able to share my experiences.
- A. The other parents I met at the hospital have become some of my best friends.
- Q. Continuing with support groups - is it better to have a health professional present, or would you prefer to be a parents only group?
- A. I would enjoy having a health professional present every now and then.
- A. Yes, I would like to have a health professional join us.
- A. I have found that it goes better with a social worker type person.
- A. Yes, but not all the time.
- A. Having a health professional every now and then, that would be alright. I personally like it being accessible to both parents and kids with heart problems, like myself, although, I am a 27 year old kid.
- A. I think it's best to be officiated by someone with either counseling or social work experience. But I think it might be helpful for some health professionals to sit in and listen to the concerns of parents, just as we are doing now.
- Q. For those of you who are adults- would you prefer to be followed by an adult cardiologist, or a pediatric cardiologist?
- A. Adult cardiologist.
- A. I used to go to an adult cardiologist, but now see a PC.
- A. A pediatric cardiologist.
- A. I have always used a pediatric cardiologist.
- A. My adult cardiologist just didn't work for me.
- A. I was told that my son could see an adult cardiologist when he reaches 18. That frightens me.
- Q. So you don't mind being seen in pediatric settings? Do you ever feel like you don't "fit in" ?
- A. No. I actually like playing with the toys!
- A. My PC had a clinic for the adults he treated, but it was discontinued. This doesn't bother me, as long as I am being seen by someone who knows what they are doing.
- A. I don't mind at all. In fact when I was 24, I went to my pc and I was 6 months pregnant. Boy, did I get some looks from other patients’ families! It is the care that is important.
- Q. For the adults again - what about insurance coverage? Do you have trouble getting it, and if you can get it, do they restrict who you can see (pediatric or adult M.D.)?
- A. I can't get life insurance for my son. That's frustrating.
- A. Me either.
- A. I haven't had any problems getting insurance, even with the HMO's.
- A. My insurance let me see whomever I wish, so far.
- A. When I ask for life insurance, they laugh at me.
- A. Yes, insurance is a problem. Boy do I have stories about that, but have never had them state whether to see and adult or pediatric cardiologist.
- A. Getting coverage was a joke when I turned 30. Finally, I got on my husband's policy.
- A. Life insurance has not been possible for me yet.
- A. I got life insurance when I was 30, and once again when I was 35.
- Q. Tell us about any negative experiences you have had with doctors, or things that have really bothered you.
- A. Not being thorough - not giving all the information.
- A. Doctors who talk down to you, or ignore you.
- A. Lack of willingness to admit they did not know about HLHS. Unwillingness to get the answers from someone who did.
- A. Knowing less about my son than I do, and failing to seek information from other places or listen to me about his treatment.
- A. One surgeon would not believe me about a personality change which occurred after surgery.
- A. What bothered me was being told that my child was hopeless, and getting those disapproving looks when I reported to him who we wanted for surgery.
- A. Being treated like we aren't supposed to ask questions or learn anything, just follow whatever he said – blindly.
- A. One pc told me I needed surgery, and then 2 days before, he told me he changed his mind. He wanted me to go to a doctor that did experimental surgery on me 5 years before.
- A. The inability to communicate in layman's terms. Assuming we can't understand.
- Q. How do you know when a doctor has "heard" you?
- A. When he answers your question.
- A. They acknowledge you, and discuss things openly with you.
- A. After 40 years of doctors, you know when you are being heard.
- A. They're comfortable with you, and you're comfortable with them.
- Q. What if they "heard" you, but give you an answer you don't like?
- A. I always get answers I don't like.
- A. You aren't always going to hear things you like.
- A. Sometimes the answers aren't what you want to hear, but they are the truth.
- A. I tell my doctor if I don't like what he's saying.
- A. What's to like about chd?
- A. Well, I must accept the answer if I am to ask the question, but that doesn't mean I can't get other opinions.
- A. I want my doctor to be very straightforward with me.
- Q. For those adults with CHD - how do you decide to tell or not to tell someone you have it?
- A. It depends - if they are really concerned, or if they are just staring at my blue color.
- A. I never told anyone until I had a valve replacement 6 months ago, and now my CHD is part of my life again. Even when I told people about it when I was "well", it didn't seem real to them. It is more real now because I just had open heart surgery, and was off work for a couple of months. So it has now altered my life again.
- A. If I know I'm going to be friends with the person, then I tell them. And I have to be really good friends.
- A. I never told anyone until I was in high school.
- A. All of my friends in school knew about me. I had my surgery when I was 9. Most everyone around me knew I had it, because of surgeries, stays in hospitals, etc.
- Q. How do you handle medication issues with your children?
- A. My child is 11 years old, and he is just now starting to be partially responsible for his meds. Scary.
- A. My son has opted for a homograft rather than a mechanical valve because he knows he's bad about taking medication.
- A. My teen aged son is responsible for taking his meds- I do not remind him about it, even when I know he has skipped a dose of something. If I remind him or nag him about it, he will not learn to be responsible for his own health.
- A. I agree. By the time they're teens, they have to do it themselves. They know the
repercussions.
- A. My son is only nearly 2, and the hardest thing is that I know some day, his condition is not going to be about me... its going to be about him. And I want him to be prepared for that.
- A. It will be our responsibility to teach our children how to best take care of themselves.
Your feedback is very important! Please e-mail us
with any questions or comments about this article.
Return to Resource Room.
|
|
|
