ByJodi Smith Lemacks, Esq.,National Program Director of MendedLittleHearts
There is something wrong with your babys heart, the doctor said, and in an instant, your world changed. Pregnancy excitement and anticipation turns to fear, sadness, worry and anger. Well-made plans are altered to make room for hospital stays, heart surgery, medications, special care and a world of unknowns and uncertainties.
At least 40,000 parents will hear these words about their babypart of the 1 in 110 with a congenital heart defect (CHD). Nearly 25% of those will learn, in addition, that their baby needs medical intervention, often surgery, to survive.
Because the moment of diagnosis is so crucial, the way this diagnosis is communicated has a life-changing impact on families and can mean the difference between hope and no hope, acceptance and denial, coping and falling apart, and so on.
Most parents can easily recall the experience of learning of their childs diagnosis, often including the date, day of the week and exact time. Feelings when learning this news stay with parents for years after diagnosis, maybe indefinitely. Common descriptions are feeling like they were being punched in the gut, like they couldnt breathe, like the world was spinning, like they were falling, like they might pass out and like the floor was dropping out from under them. Some said the experience was a blur. One parent stated, I was already exhausted as he was diagnosed after birth in a different city. Good thing I was sitting down.
For most parents, the diagnosis, whether before birth or after, is a huge shock a few parents even used the word blindsided when describing how they felt. The cause of most CHDs is unknown, so most parents are not expecting to hear that their child has a heart problem.
Mended Little Hearts asked the experts (the parents themselves, of course) what advice they would give to doctors communicating a diagnosis of CHD to parents. Heres their list of Dos and Donts:
Dont
1) Dont lack compassion. This is a family and not a medical case.
Unfortunately, while many medical professionals are good communicators, far too many parents still report feeling a lack of compassion from the medical professional communicating diagnosis. One parent stated the sentiments agreed upon by many others: I think they [doctors] do it so much, all day long, that it seems common to them. Sometimes it can be taken as them not realizing the gravity to the family. Another stated, Sometimes these doctors get all wrapped up in patients and procedures they forget they are not only dealing with babies and children but parents, grandparents, siblings, aunts, uncles and cousins not to mention others who love their patient as well. Repeated words of advice to doctors was, Remember this is someones tiny newborn or child and not just a clinical case.
Some moms felt that their unique situation of learning the diagnosis after just giving birth isnt treated with empathy and understanding often enough. One mom advised, Dont forget about moms who have just given birth. They are in the hospital without their baby. Many of them leave against medical advice to be with their baby. It is very difficult to be a mom who just had a baby in the first place, but then you are dealing with all of this other stuff.
The words used at diagnosis matter and stick with parents. Negative statements, unfeeling statements or extremely brief statements can be emotionally harmful to parents. One parent said one of her childs doctors just said, Im sorry and sent them to another doctor. Luckily, more training is being done on this issue now. One resident asked a mother whether she wanted the good news or bad news first. This prompted the cardiac team to give lectures to medical students on bedside manner.
2) Dont give insufficient information.
Aside from pessimism and insensitivity, lack of sufficient information was the number one complaint of parents regarding diagnosis. Many felt that they didnt have enough information about the diagnosis itself. One parent said the doctor handed them a piece of paper with the diagnosis and then left the room. Another said the doctor kept asking the parents if they understood, but gave the information no time to sink in. Similarly, parents reported feeling rushed into a course of action that they were not comfortable with because everything happened so fast. Except in cases of extreme emergency, parents need to be given time to process information. Also, follow-up is crucial so parents can try to understand and ask questions when they are calmer and better able to think clearly.
In addition to not having enough information about the diagnosis, many parents said they didnt feel adequately informed about other problems that go along with a CHD diagnosis. The most common complaint was that no one explained the feeding problems that often accompany CHD. Parents want to know about how and when their child can eat and about NG and G tubes, if applicable. One mom reported that she really pushed her child in physical and occupational therapy because she believed the feeding problems were unique to her child. She felt upset about having done this when she later found out that they werent unique. Others said there was no support for breastfeeding and no information about feeding alternatives with CHD babies.
Parents also reported being unprepared for is a change in family dynamics. One parent stated that she had no idea she might have to quit her job, and that was particularly upsetting. This is quite common, however. Parents are often unaware of special care needs that may require changes in employment for one or both parents, childcare options, and even where the family lives.
3) Dont make parents wait without reassurance that its okay to wait.
Many parents reported having an initial diagnosis and then having to wait to see the fetal cardiologist or cardiologist. This was terrifying for them, and they didnt know whether their baby could die at any moment.
One parent said, Some OBs are not able to talk to parents about the CHD or even identify it correctly. This leaves the parents scared and confused. They feel like they are going to have to give birth right then, and their baby will die. If there is a waiting period to see the fetal cardiologist, that is excruciating. There needs to be OB training to at least tell the parents it is okay to wait for the appointment with the fetal cardiologist, and the cardiologist can give more specific information. If CHD is the #1 birth defect, why arent more OBs better trained?
In addition to waiting to see the doctor, parents may have to wait, even weeks, for test results. This can be emotionally draining and terrifying. One parent advised, If there is good news or a possible treatment like surgery, tell it right away. If you dont, the parents imagine the worst-case scenario. As a parent, the first thing you want to know is if there is a solution. It is not about giving someone false hope that surgery is a fix-all, but it does give them a way to see that there is a chance at a future for their precious little child.
4) Dont fail to allow opportunities for questions
Parents just learning that their baby has a severe heart defect are in shock. They do not know enough even to know what questions to ask. Parents need to be able to ask questions after they have a chance to digest the information, and if they cant ask the questions, they often assume the worst or find information online that is inaccurate and scares them more.
Parents often feel like they cant ask questions. One parent reported being told about her baby over the phone in the hospital waiting room and not given any chance to ask questions until hours later. One mom shared her story The visiting pediatric cardiologist literally came into my room post C-section, told us our baby would need open heart surgery (we had no prior knowledge of a CHD for our son at that point) and to schedule an appointment with his secretary the following week. Oh, and don’t Google it, you’ll just scare yourselves. (Cue door closing.) We didn’t even get a chance to ask one single question.
5) Dont predict the future.
Pessimism was the most common complaint of parents who had a bad experience with the doctor diagnosing their childs CHD, and these experiences, unfortunately, are not uncommon. Pessimism, especially at the time of diagnosis, sticks with parents and impacts their mental health. It can increase their anxiety and cause depression. When the diagnosis was pessimistic, many parents also reported feeling pressured to terminate the pregnancy.
Many parents felt like the doctor predicted their childs future in a negative way, and sometimes their predictions turned out not to be true. One parent advised, Dont predict childs future if you dont know it. Some parents are told their child only has a certain time to live, wont be a contributing member of society, wont walk, talk, etc., but they were wrong. This can be very harmful to families. There were many people who agreed and gave examples of their child thriving despite being told he or she would not live long, attend regular school, play sports, enjoy life, or be successful. Not all children will thrive, but doctors should not take away that hope.
One parent described an experience that several others had as well. She stated, They [the doctors] started out SO negative. They came in talking about it [the childs heart condition] and emphasizing the high mortality rate and transplant likelihood. I really felt as though they were advocating at first for terminating the pregnancy. They said our daughters HLHS was so severe that she may not even make it past 32 weeks gestation without needing to be delivered and operated on. She ended up being induced at 41 weeks and went on to have 2 successful surgeries. She’s now almost 3 and doing very well.
While parents dont want doctors to sugarcoat the situation, they also want to be given hope. They want doctors to understand that no two CHD children, even those with the same CHD, are alike. Some children surprise everyone and do very well, and some surprise everyone and dont do well, but no one ever truly knows how a child will do.
Do
1) Do understand that most of what you say will not be understood at the time of diagnosis.
When shocking news is given to humans, our brains go into fight or flight mode and cannot process information well, or sometimes at all. Effective medical professionals remember this and speak slowly and clearly, repeating key information and follow up.
Parents who had a positive experience with the diagnosis doctor(s) said the doctors took their time, sat down with them, spoke slowly, and provided information about how they could contact them to ask additional questions. Some doctors even followed up with the parents the next day or in the following days to see if they had any questions.
One parent said the fetal cardiologist fit them into her schedule late in the day and then sat down with them like she had all the time in the world for them. This made a huge difference to the parents and let them know they could ask questions and get more information.
2) Do allow for questions.
Parents talked about good experiences with doctors who let them ask as many questions as they had, not just at the time of diagnosis, but later as well. These doctors invited and encouraged questions rather than just asking once if they had any questions. One doctor said, I know this is shocking news for you. It is normal for parents to have many questions, and I would like to answer any question you have, if I can, no matter how insignificant you think the question is. All questions are important. Some doctors encouraged parents to keep a notebook with them and to write questions they have as they think of them so they can ask the next time they see the doctor.
Some medical professionals gave contact information for questions that parents might have later, and some even followed up with the family. This made the family feel much more comfortable with the care their child was receiving and they felt much better informed.
3) Do give complete information and tell them where they can go to get more.
Again, in the positive experiences, parents reported that the medical professional diagnosing their child not only allowed for as many questions as possible but gave as much information as possible and where parents could go to find more. These doctors did not overload parents with information, but they gave clear verbal and written information (the heart drawing is always appreciated by parents), and they let parents know where to find safe and reliable online information. These doctors understood that saying, Dont Google it leads to Googling it, which often scares parents more. Some physicians also gave parents written information and/or booklets.
In addition to information about the CHD, parents want information about issues that accompany CHD like developmental issues, feeding issues, growth issues and financial issues. One parent suggested, Encourage OT & PT evaluations right away, if necessary, especially for complex CHD. I feel like we were so overwhelmed by the day-to-day care of our daughter that we waited longer than we should have to get her started in Early Intervention. Had our medical team emphasized that these kids are often delayed due to their circumstances we probably would have enrolled her sooner. Its very hard to get their physical development back on track once it gets delayed. Many others agreed that the developmental issues can be difficult, sometimes even more difficult than the heart issues, and they wished they had been better prepared.
Parents want to be told everything so they know the full scope of what they are dealing with. Probably the most important thing to tell parents, especially mothers, is that they did nothing wrong. There is an incredible amount of guilt that often accompanies a CHD diagnosis, and giving some reassurance makes a huge difference in the mental health of parents.
4) Do have empathy and compassion.
One parent said, A good cardiologist makes all the difference because you are changing a familys life forever. They described these good doctors as calm, patient, honest, direct, and compassionate. Doctors described as skilled at delivering hard news used simple, easy-to-understand terms, spoke slowly, and gave the parents plenty of information to read later and safe websites (preferably with 3D color images and parent resources) as well. Many doctors drew a diagram of a normal heart and their childs heart to help them understand.
Empathy and compassion make a huge difference in how a parent handles the diagnosis, makes decisions, and cares for his or her child. As the saying goes, People dont want to know what you know until they know that you care, and that hold especially true in these crucial moments.
5) Do follow up.
When a medical professional follows up with a family, whether it is a doctor, nurse, or part of the care team, the family feels much more comfortable and confident than when there is no follow up. A simple phone call makes a huge difference to families. Emails, unfortunately, are not the best way to follow up and can be misinterpreted.
Some of the doctors even gave the parents their cell phone number or another contact number so they could contact them later and ask all the questions they forgot to ask when their brain was offline.
6) Do listen.
In good diagnosis experiences, the doctors communicating the information truly listened to the parent(s) and learned what is important to them. Parents sometimes feel like doctors are making decisions based on their medical background rather than based on their human being background. In positive experiences, parents felt that their feelings and questions were really heard and answered. They felt like they were respected, even if they decided on a different course of action that was being recommended to them. Most importantly, parents who felt listened to also felt like they were an important part of the care team for their child, and that can have lasting effects.
Additional Advice from Parents
Here is some other good advice from parents:
- Have a one-page handout about the childs heart defect that is easy to understand.
- Let parents ask as many questions as possible, and encourage them to write down the answers, preferably in a binder.
- Make sure both parents are present, if possible.
- Make sure other family members are not in the room unless the parents want them there.
- Always tell parents in person.
- Dont tiptoe around what is going on. Tell parents in a very straightforward manner what is wrong.
- If possible, deliver the news quickly.
- Allow parents to be emotional.
- Give them a number to call for when they have questions later.
- If there are doctors (ex. OB/GYN) who have a relationship with the family, be sure to keep them in the loop.
- Encourage a second opinion.
- Give information about your hospital including survival rates for the childs heart defect.
- Give parents something to give to friends and family members that explains the childs CHD.
- Follow up with the familycheck on them to see if they have questions once they have had more time to digest the information.
Finally, one of the most consistent comments made was about parents feeling like they were the only ones dealing with CHD. In an informal survey Mended Little Hearts did in 2013, 51% of parents had never heard of congenital heart defects until their child was diagnosed. Hopefully, there has been more awareness over the past years, but doctors need to realize how alone parents feel after getting this diagnosis and connect parents with other parents through organizations like Mended Little Hearts.
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