What is Normal Child Development in Children with Complex Congenital Heart Defects? (Remastered)

With more children with complex, congenital heart defects, or CHDs, living beyond their first year of life than ever before, parents and the professionals working with those children need to know what normal development is for this group of survivors. What kind of behaviors are normal or common? Is it to be expected that the majority of these children will be labeled “Failure to Thrive”? Is it common for children with major heart defects to need feeding tubes? How does the use of feeding tubes affect speech and language development? What can parents and the professionals working with them do to help these smallest survivors have a good quality of life? Who should be part of children’s care team? When should parents seek outside help? These questions and more are answered in today’s episode: What is Normal Child Development for Children with Complex Congenital Heart Defects?

Transcript

spk_1:   0:05
Welcome

spk_2:   0:08
to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH D or congenital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an ID Dworsky

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13th episode of Heart to Heart With Anna, a show for the congenital heart defect community.

spk_0:   0:37
Our purpose is to empower members of our community with resource is support and advocacy information, according to the University of Rochester, Medical centers help encyclopedia on growth and development In Children with congenital heart disease. Children with congenital heart disease often grow and develop more slowly than other Children. For example, Children with congenital heart defects, or C HDs may look much younger, thinner, perhaps frailer than other Children the same age. The child's doctor may say that the child's hide a weight or in lower percentiles, meaning that a significant number of Children in the United States or taller or heavier than CHD child Children with PhDs maybe slower, too developmental milestones than healthy Children such as rolling over sitting, walking, talking and toilet training. Additional Children with C H D is may fall behind in their development for several reasons, including associated genetic syndromes also affecting cognitive and motor development. Inadequate nutrition, not meeting the body's energy requirements. We're allowing for proper growth and development of muscles, bones and brain and nerve cells inadequate. Tricia not meeting the body's energy requirements. Causing Children to tire quickly or not be able to physically keep up with others or same age illness and frequent or prolonged hospitalizations may prevent child from receiving stimuli that help with developments such as being played with talk to held or touched. One of the things that the website doesn't mention, but which I feel is very important, is that our Children's wear thin development is interrupted. Most Children have continuous opportunities for learning, but due to the nature of our Children's birth defects, there are opportunities for learning are interrupted by open heart surgeries being on ventilators, paralyzing drugs, and they have to deal with recovery times, which set them back in their opportunities to grow and learn. Children without heart defects don't have these issues to deal with, So comparing our Children with C H. D is two Children who don't have these interruptions. The growth and development really isn't there. That's why today's episode What is normal child development for survivors with complex, congenital heart defects is so important today we'll meet three individuals who have firsthand knowledge of developmental issues involved with Children born with complex CH. D's. On our show is returning guests and heart mom Eileen Perlman, who today will share her experience and advice as a speech language pathologist. Working with Children with speech and language issues as well is Children who are born Mercy HDs. We will also meet Heart Mom Vicky Lucas, who is also a special education teacher who has experience in working with Children with learning disabilities in CH. D s. And finally, we'll be gone already. Who will be joining us today to share her experience? Working with Children with C. C. H. D. Is as a neuroscience ologists. I leave. Perlman has two daughters, Jessica and Amy Cohen. While pregnant with Jessica, she thought everything was fine. Jessica was born on June 7th, 1983. Doctors began monitoring her heart due to an irregular heartbeat. Three days later, after extensive testing she had emergency surgery because she had hope a plastic left heart syndrome. But nine years before Jessica was born, Eileen was already a practicing speech language pathologist. She began a career, is a speech language pathologist in 1974 and she works primarily with students who have special or multiple needs. We'll meet Vicky Lucas and Dr Dong Large days later in our show. Thank you for coming back on our show.

spk_5:   3:53
Sure, Anna, it's a pleasure to be here.

spk_0:   3:55
Well, many of our Children with complex CH D's or C C. H. D. S have feeding its due to being intimidated for a long time. Can you tell us how that situation can lead to speech and language problems on what parents get to minimize possible problems?

spk_5:   4:11
Sure, it's really important to understand that babies learn to eat before they learn to talk. This is really important in the development or the strengthening of the muscles used in speech because the muscles in the face and so if a baby of not eating orally because it's intubated or because of feeding tubes than some of the feeding problems can include the baby being too weak to eat due to a heart problem, which really isn't because of the intubation. But this could be a problem for heart baby weak muscles that are needed for babies to soft reflux or gird failure to thrive. As you said earlier, the baby's being slower to develop and gain weight. That was certainly an issue with my daughter. She was very slow weight gainer and then swallowing issues can be often a factor. It doesn't mean that every heart child is going to have these problems. They're often seen in other conditions, too, for minimizing the problems. If a G tube or an N G tube is necessary, you kind of have to wait till the medical issues are resolved to begin to feed the baby by mouth. And it can happen with older Children to that they're intubated for a long time, and then they have a meeting, too, too. But the best thing to do is to work with a speech language pathologist who is trained to do feeding their apiece. If you go through early intervention, which is really a very important thing, and I think it's available in every state, early intervention can provide parents with the proper guidance. They'll have feeding specialists or a speech language pathologist who are beatings. Best was on then, sometimes ot gets involved with that occupational therapy and even sometimes physical therapy with positioning for feeding. There's a lot of information online. You have to be really careful about that. There's some good information, but also it's important just to follow the team approach to what is best for each individual child.

spk_0:   6:23
I love that you say that because the parents are very special part of the team. We are with our Children 24 hours a day every day, and we have to become the experts. When she say that. Eileen, we have to be coming out. It's

spk_5:   6:37
really important. And if your gut is telling you something is wrong than it's always wise to get a second opinion,

spk_0:   6:44
absolutely. You know, in a lot of the bigger cities, they actually have feeding clinics. So if you live in Atlanta, I know for a fact they have wonderful feeding clinic. But if you live in a big city or near a big city, you might also check and see if you have availability to go to a feeding clinic. I would think that that would be really beneficial for our Children. With food, I have Children with complex th D's develop aural aversions. Can you tell us what that means, Why Children would have that problem and how parents can help minimize the aural of versions their Children may have?

spk_5:   7:18
Yes, what happens a lot of times is because tubes are being put in and taken out of the baby's mouth or nose things air being taped to their cheeks. A lot of times they associate eating with people, doing things that are painful or uncomfortable. It's very common to develop aural aversions. A lot depends on the child's age. I was reading something yesterday that said that aural aversions can develop because of all this intervention. And what's important is that the baby's air losing time to suck because let's things were being done to their face so they can't really eat the way most babies do, so they lose it on the fucking and then sometimes, because they're a little bit older, they might start losing out at points on their eating so their muscles are underdeveloped. And you can talk to your doctors about non nutritive sucking which is like you might use a pacifier or a really clean finger dipped in something and putting it in the baby's mouth. It's really a good thing to do that. Touch their cheeks, touch their mouth, kiss them on their face. Don't be afraid to get in and stimulate some of those muscles because they will down the line really help them if they start to develop some of these versions, they said in something I read that

spk_0:   8:54
they

spk_5:   8:54
don't have a memory of some of this stuff because they're babies. But there is a body. Memory was when I was reading, even though it not a conscious thing. It's sometimes a problem because it's just kind of a kn instinct that it was not pleasurable. So the babies have to be made or the Children feel pleasure from people. Touching their face doesn't mean everybody should be touching their face. You know, Mom and Dad, certainly, and maybe grand parents, but it's a good idea,

spk_0:   9:25
and I have seen in the hospital that sometimes the nurses would give the baby is a pacifier, have tubes just to stimulate that sucking reflex because it is important for them to not lose that reflex of possible. So I lean in your experience in working with Children with complex the HDs. How does their speech and language development differ from Children who don't have heart defects?

spk_5:   9:51
I worked in special at. I've been working on Special Ed for years and years, and we had a lot of kids with zippers. I don't know that it was because of the heart problems. Often times there are multiple needs because, as you said, there are other syndromes or things involved. Sometimes breath support could be a factor, which is really important when you're talking again. The muscle weakness can be a problem. If there were inspections are feeding tube. I really encourage people to look at their Children. It's an individual. I'm not compare. There are all kinds of statistics and growth charts and all kinds of things for speech and language that are very accessible on mine. But if you're expecting your child to flow within the norms, it doesn't always happen. It's important not to compare your child. Other Children were siblings especially. But just to be aware, if there are problems, the sooner you address some the better, which is why early intervention is really important in Illinois. When Children get the age of three, they're eligible for. Service is in the public schools, so river don't worry about it. Seek out professional help. I don't know that I would notice that kids with heart defects have any more trouble than any other kids my daughter seemed to develop, although she was hard to understand sometimes when she was little. But you know, that's typical when you're learning to talk, but sometimes you go through a period where you're sort of hard to understand, and then you work your way out of it. But if there's any doubt you go and seek professional opinions or evaluations,

spk_0:   11:40
That's excellent advice, and I agree with you 100%. My son had vocal cord paralysis, and he had partially paralyzed diaphragm. So even though he was developing speech normally until he had the surgery, where those were some complications, right? I haven't

spk_5:   11:55
professionally seen that, but I

spk_0:   11:57
know

spk_5:   11:57
it exists.

spk_0:   11:59
Well, that's good. I know. I think it's not the norm for certain. It is something that happens with some Children, but it is not the norm. Well, thank you so much for sharing your experience and advice without styling, and I do agree with you. I think the parents, no their Children. And if they do have a gut instinct that something is wrong, that's when you should go and have it checked out with the professionals. And early childhood intervention is definitely a good idea with our kids. Now it's time for us to take a commercial break. But don't leave because coming up we have a heart mom who will share with us academic problems that she has seen in Children with heart defects. Find out which saw what those problems were that she had with her own said

spk_3:   12:39
when we returned to Heart to Heart with

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Anna. Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program keep up to date with CHD Resource is and information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the C H D community. Visit Heart to Heart with anna dot com. Today

spk_1:   13:25
you

spk_2:   13:28
are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com. No back to heart to heart with Anna

spk_3:   13:48
Welcome back to our show. Hard to help with a chauffeur. The congenital heart defect community. Today

spk_0:   13:53
we are talking with heart moment speech language pathologist Eileen Perlman, heart mom and special education teacher Vicky Lucas and neuropsychologist Dr Donna Lardy about normal child development in complex THD survivors. We just finished talking with Eileen Perlman about her experiences, a speech pathologists working with Children with complex See HDs. And now we will turn our attention to Vicky Lucas. Vicky Lucas is a special education teacher and mom to teenage sense 14 year old Ian, 16 year old Alex, an 18 year old Zach. Vicky and Steve had been married 20 years, weathering the challenges and thrills of raising three sons, including a child with a complex congenital heart defect over 50 years of classroom experience and private tutoring have given Vicky insight into the challenges and learning styles and needs of her students. Alex was born with hypoplastic left heart syndrome. He has had four open heart surgeries and multiple catheterizations. Alexander has seen a gamut of learning environments from specialized preschool learning, language development, self contained classroom resource, room in class support, culminating in a 504 status for a child expected to use a picture exchange communication system or pecs communication system. Alex has since progressed to honors and talented and gifted classes. Alex is planning to attend college. We'll meet Dr Donna Lardy in our next segment. Thank you, Viki, for coming on heart to heart with Anna

spk_4:   15:21
I Anna. It's a pleasure to be here.

spk_0:   15:24
Well, it is so exciting for me to see how many different opportunities Alex had to test out the system, the educational system and to see that it worked. It has

spk_4:   15:35
been wonderful.

spk_0:   15:36
I know as especially teacher myself. It's always so gratifying to see that all of the efforts that we put into helping our students with special needs really can pay off and for Alex to be at the point where he's an honor student. He's a tag student and he's making plans to go to college. That is so exciting.

spk_4:   15:55
It sure is.

spk_0:   15:57
I was shocked to see that Alex needed a picture exchange communication system, those systems air typically used for Children who have severe expressive language problems. So can you tell us a little bit about Alex's speech development? And whether or not his speech and language development problems early in life resulted in academic problems when he became school age?

spk_4:   16:17
You're Alex was in early intervention. He was identified almost immediately after birth. We were contacted, and they were very quick to begin the process of involving him as literally. As soon as he was eligible, early intervention started coming to the home and working with him on physical therapy, occupational type therapy and speech therapy. We have had a very long as Eileen said. It was a slow road with expressive language. His receptive language as he became a older baby and a toddler. We could see his expressive language was intact and beautiful. He would respond to all commands, all requests. He would watch a TV show or a video with humor, and he wouldn't be in the room laughing, but we knew he was getting it. I said, I just know it's in him but we just could not with a crowbar, get it out of him. But the speech was almost trapped in a way where he could not find the words could not formulate the normal process of coordinating phrases. Mego, my dog, any kind of phraseology. It just became a real struggle for him, and he entered early intervention. He entered the preschool handicapped program in our public school system. Very close to our home in the preschool Learning Program. Started him about 3 to 6 months after he started in their program, coming home with information about the pics or picture exchange communications system, and with pecs or with the picture of change system. Symbols and pictures of items and gestures are put on small cars. And those cards air put on Velcro strips in a notebook so that the child can go to command sections and can go to topical sections like play or food activities, pictures of mom pictures of that I want Cookie and he would find and use hand sign gestures I want and the picture of a cookie. So instead of playing, what do you want? Do you want a banana, Annapolis cookie, a piece of pizza? It was I want and he could find that we never let up. And I think parents as a mom and as a teacher, he's got to be hands on. You've got to just can't let up. It's your investment and your child And we used the picture system. We use flash cards. I believe that gave him a jump on preschool when he started in kindergarten. They enrolled him in a language and learning development program, flash past a kindergarten, and we repeated that for two years. So by the time he was in the second year of the kindergarten process, he was really, really just about on track with his peers. For most of the development, we've still continued to be the most difficult to schedule child in the school with PC OT, speech and ultimate be

spk_0:   19:17
Yeah, that's a lot to have to deal with. But boy, he understood a lot about scheduling with all of that, didn't he?

spk_4:   19:23
He was very I can't say enough I was very blessed. I know people don't always have success stories in the public school system, and we have decided that because of my educational background, that if we ever had to, it would be an option that I would homeschool him as a possibility or do a combination of the two types of service is. But Eileen had mentioned the speech delays and possible effects with intubation, and I feel like that was possibly quite definitely part of it the normal speech development, even the development of the teeth and the palate and the epiglottis that all of those items were affected in this process. But we now as a teenager and we have a major gag reflex of the dentist, I believe that like she said, there's a body memory association.

spk_0:   20:11
Yeah, that muscle memory is lasting, and that spot it's learned karate or gymnastics. They have them do the same exercise over and over, so the brain doesn't even have to think about it. The body owes what to do. Unfortunately, that can work against us exactly what you're talking about with the gag reflex or with the aversions to start in parts of the face being touched or even with the tongue. People don't realize how many muscles are just in the tongue itself, so that definitely can cause some problems that you've been working with, students with heart defects and learning disabilities for a long time. So can you tell us what kinds of problems you've seen with the Children who have complex, congenital heart to fix and what parents can do to help their Children?

spk_4:   20:55
Absolutely. With CHD, the complex defects are often, as Eileen also said, and you said there multiple in nature. I've worked with Children with long term behavioral problems. They experience higher levels of frustration. There's the frustration of their own limitation that they might face, and frustration of the work feels extremely overwhelming. There's a physical frustration. There is a tendency for Children to be misdiagnosed, and often they are correctly diagnosed with attention deficit disorder or hyperactivity disorder that this may not be true. A. D. H. D. This is the body's inability to handle the stamina and endurance necessary, sometimes just to sit in a classroom and continuously, it's mentally and physically exhausting toe. Listen to someone or 15 or 20 minutes so the Children will be fidgety and Children should be allowed. Two. Be a little fidgety in their seat, and some Children use special cushions for feeding so that there's that texture feeling when they're seated and the chair's not so hard. They also might have a little nubby ball or something fuzzy that they can squish in squeezing their hands for stress relief. I have seen academic performance is that very? And it does depend upon the complexity of the defect, the amount of time child was on a heart, lung bypass, oxygen deprivation and the time the child has spent in the hospital. I know Alexander's first hospitalization was around 28 days, and this was in 1997. He also at that time had an emergency surgery revision. So had the first surgery and then had a revision 6 to 8 months later, had another second stage surgery and then a year later had the final stage surgery and each one of those he was in the hospital about 14 days. Some Children are in the hospital for months, and this can affect gross motor development. Find motive, development, toilet chaining. We can see Children with a taxi. In fact, Alexander was told at one point that they saw symptoms of a taxi. He's also had a diagnoses family found the Venus hemangioma in the brain, so there's a link. There is definitely a link between this oxygenation and the brain development. As her parents, I think parents is the child's best mouthpiece. Their advocate is the parents and the Children's best understood and best represented by their parents. Parents should read and with caution, a nun open mind the things that they can ask people ask, experts, ask their doctor asked if the doctor doesn't know, the doctor needs to try to help them find a source. Learn as much as you can understand. Support Network Support Group. Find a Special Service team member. If you're in a preschool learning handicap program, find a representative. Often a school district has a special service. Is parent association or representative person or find someone another heart. Mom. I have been an advocate of gone in many I p individual education. Planned meetings been in many I P meetings and descent there as a voice of reason and a moderator of sorts to help parents navigate this field because even being in special education, be I meetings are intimidating and the strategies. I was fortunate that I was able to even go into meetings with strategies already drafted. Many, many parents, more than we ever know, are not prepared for the experience of going in and dealing with a team is going to guide and direct your child's education. And I fully believe that you've got a good special education teacher and you know your child the best and be the number one advocate for your child. There are various educational strategies, and you might want to zero in on those as well.

spk_0:   24:51
Well, I love what you said about having another hurt mom or an advocate in with the parent, because it can be overwhelming. I'm especially a teacher to you, but there's many different terms that are used that you and I know what those mean. But somebody who's not in the educational field wouldn't know what some of those things mean and might be frightened. Plus, it's a little emotionally taxing and have one professional after another gave a critique of your child's progress like

spk_4:   25:20
a peek. It's almost I've likened it to a tribunal,

spk_0:   25:24
and many

spk_4:   25:24
parents have gone through special education for various things. Congenital heart defect and other disabilities, illnesses or conditions. I know that you are on one side of the table in most cases, and almost everyone else is on the side and around the other side of the table so it can feel overwhelmed. I asked parents that I work with as a teacher and as a friend to gather the resource is that they have on their child gather your medical documentation, put it in a three ring binder with Tad. They're early birth records, those kinds of things, everything they can think of, put it in a coordinated record. And many hospitals in the patient advocacy department will have a almost a notebook like a binder kind of set up that they will pass. I know Children's Hospital in Philadelphia has a setup like that, where they will give parents a pre organized notebook that can't go home and fill in with this. Information and medical records are in that binder, and you just pick it up on the handle and go. You can go into your I P meeting shouldn't go to your doctor visits and everything gets filed in one location. So this scrambling also those terms learn as much as you can. And I love being an advocate for parents and Children because we have to give these kids a voice. There's so many areas where we need toe work to help educate our educational system, our educational staff on the needs of our kids, and not to be afraid of our Children because they are often very, very afraid, whether it's in physical education or in the classroom or in the hallway, that our Children will have an episode that is chronic and critical. And the more you informed these talented professionals at work with our Children, the more you informed these people. It empowers them. And when they see this child in the hallway, they know whether they're child is pale or not, and whether that child is going to faint or not. But we really teach people to be in tune with the kids.

spk_0:   27:17
Well, I love everything that you just said. That is so correct, and it really does take a village, and this is you need more than just your classroom teacher to be aware because the classroom teacher could be out sick Yeah, so

spk_6:   27:31
and

spk_0:   27:32
that's very important. Heretic. Hot. Well, the school nurse and other people need to be aware of what your child's coloring is. For a lot of our kids with C C. H. D is they look a little blue. That's just normal for them, right? I

spk_4:   27:43
had a school neutral would call me when his poultry would get 55 I would say Don't worry. But she would insist that I would take him to his cardiologists and it was fine and we did. And it's a good thing because I tell the people that work with my own son. And there are the Children that have different conditions with a heart defect as well. That is, I'd rather be safe than sorry.

spk_0:   28:03
My

spk_4:   28:03
schoolwork is going to be here,

spk_0:   28:05
and a good

spk_4:   28:06
special education teacher and a good in class support teacher will modify the assignments for the Children and many of them with the stamina endurance issues. It's not just physical of nature, it's also mental and emotional, so we need to chunk the information and chunk the testing that we give the kids break it down into vital part and a child will as they grow, as in my Alexander's case, a child will tell you how much they can or cannot handle, but also to never let them use this as a crutch.

spk_0:   28:38
Exactly. Thank you so much for sharing your experiences and advice. It is time for me to take a commercial break. Stay tuned to find out what a neuropsychologist from one of the leading Children's hospitals in the United States has to say. What normal development is for Children with complex congenital

spk_3:   28:57
heart defects when we return to heart to heart With Hannah

spk_2:   29:07
Manage, Dworsky has written several books to empower the congenital heart Defect, or CHD community. These books could be found at amazon dot com or at our website www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and as other books. My brother needs an operation, the Heart of a Father and hypoplastic left heart syndrome. A handbook for parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more,

spk_1:   29:46
you

spk_2:   29:49
are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Ana at heart to heart with anna dot com Now back to heart to heart with Anna.

spk_3:   30:09
Back to our show. Heart to Heart with Vanna, a show for the congenital heart defect community. Today

spk_0:   30:14
we are talking with heart mom and speech language pathologist Eileen Perlman, heart mom and special education teacher Vicky Lucas, and nor a psychologist, Dr Donna Lardy, about normal child development and complex CHD survivors. We just finished talking with Vicky Lucas about her experience as a special education teacher and a mom raising a son with a complex CHD on. We also talked with Eileen Perlman about her experiences. Working with Children with speech and language problems as well was having her complex congenital heart defect. And now we will meet Dr Dawn Already. Dr Donald Hardy is a senior pediatric nor a psychologist, a Children's health care of Atlanta and simply heart center. She specializes in working with Children who have complex CHD is requiring cardiac surgery or transplantation. Her focus is the assessment of Children's abilities, including cognitive, emotional and social functioning that's helping families and schools understand each child's strengths and weaknesses. She makes recommendations to support Children's needs. She also works with Children before discharge from the hospital, addressing family's concerns and facilitating a transition back to school. Doctor L rt and other professionals from leading Children's hospitals are building developmental follow up programs for Children with C H D is to make sure they get the necessary assessment and intervention support needed from infancy to young adulthood. Doctoral Artie collaborates with others to collect research to better understand the needs of Children and young adults with C. H. D s Welcome to heart to heart with an A doctor, a lardy.

spk_6:   31:42
Thank you for inviting me. It's a pleasure to be here.

spk_0:   31:45
I'm so excited to have someone with your knowledge Come on the show because we have so many concerns as parents. What is normal for our Children? Do you have a rule of thumb regarding when parents should become concerned about their baby or young child's development and seek additional help?

spk_6:   32:04
You're right that normal his relative, and there's definitely what we're learning is a normal or typical range of behaviors for the DHD child as well. And as you've already discussed quite a bit already on this interview piece that PhD Children do show developmental differences and due to a number of different reasons, one important rule of thumb is to ask for help. If you have any concerns, we've already reviewed some of the developmental concerns that could come across. But just to be comprehensive, some of the early developmental motor concerns we often see would be, for example, in infancy and extreme dislike of being on the stomach, using only one side of the body being slow to walk and poorly coordinated, maybe difficulty learning to ride a bike eventually. Fine motor difficulties again. These are all within the realm of what's normal for the DHD child. You might see problems picking up small items, learning to sell feed, learning to tie shoes and button clothing and then ultimately learning to use a crayon or a pencil and develop good handwriting. Aural motor problems You guys have talked about extensively already, and so you're gonna be difficulties learning to to make a speech sounds and then ultimately is development progresses, you're gonna see possible challenges, understanding language as well as using language. And that might just be a slow rate of progress. Or there might be some real impairments that we want to support so that rule of thumb would be. If you have concerns, you want to talk to your cardiologists or pediatrician and you want to contact an earlier intervention program during those first years of your child's life. The intervention programs do change names across states. But if you were that, inquire about early intervention in your state, you'll find what you need. This will result in a developmental evaluation by a specialist, and if the laser found they will connect you with therapies such a speech and language therapy, occupational therapy or physical therapy and the earlier these concerns are addressed, the earlier your child's needs are going to be supported. So that is my boy. Big rule of thumb. It cannot ignore your concerns.

spk_0:   34:11
Absolutely, I agree. 100% 1 problem that I've seen in the past is that some parents don't actually have a pediatrician. They just take a child to a general practice doctor. And those doctors seem to be more forgiving of early developmental issues, and they have encourage parents. I'll just wait. It just takes and longer. And you really don't want to wait because you're losing valuable time. If you wait, especially when your gut is telling you something is wrong.

spk_6:   34:39
I agree with you, Anna. What? I usually tell families who crossed my path and they may have a difference of opinion compared to maybe one of their medical team staff is that if you have concerns the worst cases that you spend today in an evaluation and they said your child didn't need surfaces and

spk_0:   34:56
isn't that what we

spk_6:   34:57
all want to hear? We wanna

spk_0:   34:58
have

spk_6:   34:58
our concerns pushed aside. So, yes, if you have concerns, you don't have to go through the pediatrician or your primary care doctor. You can call early intervention service is by your state and initiate that evaluation yourself.

spk_0:   35:11
Exactly. You stated in your bio that you're working with other professionals from leading Children's hospitals to build developmental follow up programs for Children with complex See HDs. Can you tell us exactly what hospitals air using those programs and whether or not parents can have access to the information you've acquired

spk_6:   35:29
Well, that's tricky, Anna, because there's a growing number of hospitals throughout the nation and beyond that are developing these programs. So as we speak, there are hospitals that are trying to build these follow up programs, so I'm actually not sure right now how many programs there are. Many of the major Children's hospitals who have large cardiac programs do at least have some component of the cardiac follow up programs. I am currently working with a group of psychologists from about eight other Children's hospitals, and what we're trying to do is to increase the collaboration and bill. Resource is because now that we're recognizing the need for these followed programs hospitals, air, wanting a place to reach out, to to inquire how the development unfolded and how they reached out to communities to let them know about these resource is one thing we're also working on is to publish parent friendly information about the developmental needs of CHD kids across the life span. This has just been submitted for publication, so I can't tell you the results yet, but I'll certainly stay in touch with you, Anna. So should we move through the publication process, I want to make sure that those would be acceptable to your viewers. If that's helpful,

spk_0:   36:43
why would you do that? And what I could do is when you send me that information all posted in my blawg, and people can have access to it that way,

spk_6:   36:52
that would be wonderful. Another thing I'll just add that were also working on with this group of hospitals is we're trying to collaborate to better understand the outcomes of these Children. We spent a lot of time focusing on the younger Children, and I think now we're just starting to understand some of the school age adolescent and adult needs. And so we're trying to collect some research so we know how to provide timely intervention that is gonna work to maximize child development in these kids.

spk_0:   37:21
I love that because it does seem like they get a lot of attention when they're in that inter stage between surgeries and the first year of life, and then one of our kids, especially our single ventricle kits. Once they have the Fontana two or three years of age, then a lot of times it doesn't seem like they get us much attention, but they may still need attention in certain areas, especially those pre academic and academic areas. We spent a lot of time talking about the early stages of development that could you tell us what you have learned is normal academically for Children with CC HDs. And if you could give us any advice or special considerations that parents need to take into account for their early elementary school age Children, that would be great

spk_6:   38:07
Sure, as the Children are moving into school age Generally, things are getting harder. And, as was already mentioned by Vicky, you're starting to see the Children almost grow into some of their deficits because the challenges are increasing. So as they're moving into school, sometimes you might see more attention. Problems, difficulty staying on task. A lot of these kids, especially the kids with early language difficulties, are having problems learning to read.

spk_3:   38:33
My

spk_6:   38:34
handwriting is usually problematic because most Children have some fine motor difficulties. To some extent, as the years are progressing and school is getting harder, you might see they have trouble keeping up with the piece of learning, and they really struggled to gain the Independence Inn, their homework and in their school work and the transfer from school to home. It can be so challenging whether the child seems disorganized and forgetful and overwhelmed. They might also just need tremendous repetition for simple information to sink in and for the child to be able to demonstrate that on an actual test, some Children are developing learning disabilities or attention disorders, and they really benefit from having a school plan that identifies their own unique needs, like Vicky mentioned, such as an I. P or a Section 504 plan. Unfortunately, because the learning profile of these Children can be fairly complex, relying on schools alone to complete the evaluation or the assessment can be problematic. Schools tend to be a little bit confused by these kids. They're complicated. Often times there is a delay, and service is there might be miss labeling or sometimes the recommendations and the interventions. Our accommodations are not quite on target, not because they're not in the right place in terms of wanting to support the child, but only because there are different mechanisms or developmental trajectories through which these Children develop their learning differences. And ideally, we want these kids to be evaluated by a psychologist to understand congenital heart disease or by a psychologist who understands complex medical Children. So perhaps one who's associated with the hospital where the child had surgery?

spk_0:   40:18
I think that's an excellent point. Sometimes the schools can't handle kids who are as complex as our Children. And we really do need the additional support that Onley somebody who works in a hospital setting and works with a large variety of chronically ill Children. Because it's not just Children with congenital heart defects who have sign of these problems. There are Children with other health issues that face the same kind of challenges that are hurt. Kids do.

spk_6:   40:44
You're right

spk_0:   40:44
that was so informative. I really appreciate you sharing, though, how we really need to work together as a team. The schools, the parents, the hospitals, the doctors there does get to be quite an impressive a group of people who get to know our Children pretty well. You're

spk_6:   41:00
absolutely right and just wrap up. If I could, I think that it's really important for families to appreciate the child's resiliency to We've talked a lot about the child. Sweetness is, but the families and the Children who have experienced these life changing medical events staring you. They are indeed incredibly resilient, and we want to capitalize on the strength in order to support the weaknesses as they're moving through their development.

spk_0:   41:26
I love that Absolutely. We didn't need to focus on the positive, and our kids are survivors. And yes, there are strengths there as well that we can capitalize on. And for some of us, we go crazy with some of those strengths. Like my son is extremely tenacious, while I'm glad he's tenacious because he was able to survive his surgeries. But sometimes that can also be considered stubbornness. Sure,

spk_6:   41:52
theres a balance. You are absolutely right.

spk_0:   41:55
But I think that is something that we need to keep in the back of our minds, that if you only focus on the child's weaknesses, they can paint a darker picture of what your child really is. And really, we have very bright pictures of our Children because they have survived and they have overcome tremendous obstacles. Many of them thank you, dawn, for being on the show. You have absolutely beautiful shining light out there for us to look, too, and I can't wait to see the research that you come out with. I know it's going to be so helpful to so many of our listeners. Unfortunately, it's time for me to go to another commercial break. I could talk to any of these ladies for another hour, at least, but we we do have to go to another break. But don't go away because we do have our miracle moment coming up. Today's miracle moment isn't edited version of an essay in the heart of a Mother. Find out what delays

spk_3:   42:47
Carolyn Aaron starter Hannah had and what she did about them When we returned to our department,

spk_7:   43:01
we're offering us a mechanical hot, and he said, now that I've had enough to give it to someone who's worthy My father promised me a golden dressed world held my hand and asked me where I wanted to go. Whatever strive for conflict that we experienced in our long career together was always healed by humor.

spk_2:   43:21
Heart to heart with Michael, please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced those most difficult moments. You are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show. Please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to Heart to Heart with Anna

spk_3:   43:55
Welcome back to the 13th episode of Hart to Hart with Donna, a show for the congenital heart too Community.

spk_0:   44:00
Our purpose is to empower members of our community with resource is support and advocacy information. I hope you heard the first re segments. I had three really powerful guests who not only shared information with our listeners but really heard what each of the other guests was saying and was able to piggyback information. It's been a very exciting segment today. I'm really excited about today's show, but now it's time for our miracle moment, and her miracle moment is written by Carolyn Aaron. She wrote an essay in the Developmental Delays physical section of the Heart of a Mother, and her essay is on page 56. But I've had to edit it in order to fit our time. UNAIDS Caroline writes. We stood over the warming bed and looked upon our four day old daughter two hours earlier. We did not know what she was going to live or die. Her heart had stopped beating a complication from the Norwood procedure the day before. This was a first in a three stage palliative reconstruction of her heart. She was born with hypoplastic left heart syndrome. A nurse came out of the intensive care unit to give us news that they had to reopen her chest to get her heart beating on its own. It took the doctors and nurses 35 minutes to stabilize her heart. It felt like forever. As we gaze down on our miracle child hooked to monitors and ivy polls, we thought of how the cardiac arrest would affect her brain. Actually, that didn't even enter my mind. It wasn't until the pediatric cardiologists came to talk to us that we began to wonder not whether she would wake up, but what mental faculty she would have when she awoke. And this development was expected to be a little bit off, mainly due to her cardiac arrest. At the time, a neurologist was consulted for her case and several electroencephalogram zari e gs were conducted to verify brain activity. The initial results showed abnormal brain patterns common with a cerebral disturbance, meaning seizure activity for which he was put on phenobarbital. The drugs seemed to make her lethargic even at 14 days of age. Ah, follow up E E G. At 10 months showed normal wave patterns and no signs of seizures. So we were able to discontinue. The phenobarbital can hit many of the small milestones in the early months, smiling, laugh, being sucking, her hands rolling over to her back, sitting unaided, holding a cup in spoon the usual accomplishments. She did not, however, like to be on her stomach at all, and although she set up, she could not get into a standing position on her own. To make matters worse, friends of family would continually ask if Hannah was crawling or if she had gone straight toe walking. Yet after a while, I found myself making excuses for her delayed development. It was obvious that we needed to have an evaluation done by physical and speech therapist. She was not going to just get up and start to walk and talk one day. This was a big moment for me. After all, she had been through just to be alive. I was not sure. I wanted a bunch of people telling me about more problems, but we needed professional help in waiting was not going to change that fact. I contacted a state agency that performed developmental evaluations and provided him militate of service is Hannah had her first evaluation of 14 months. It took place in her home with three therapists. There was a physical therapist, a speech therapist and an occupational therapist. I was worried she would not want to play with them, but that was not the case. The comfort of back ER of being at home in familiar surroundings made things so much easier. They put her through to test the Patel developmental Inventory and the Peabody Developmental Motor scales. There was also an extensive parent interview, an observation as they were writing up their notes. The therapist gave a lot of positive feedback about him, his level of progress that made me feel better because as an inexperienced mother, I was really worried that I was not doing things right and perhaps hindering her development. The results place the development of Hannah's fine and gross motor skills at that of this six month old, my heart sank. The other areas cognitive development, communication, development, social or emotional development and adaptive development all ranged from 1 to 5 months behind her age. The therapist explained that the tests are structured to grate on specific activities, so what they see and how the results come out may differ. The recommendation was for physical therapy once a week and a follow up evaluation in six months. We worked with the physical therapist once awakened within three months, Hannah was crawling and trying to go upstairs. We had borrowed a big ball that was used during her sessions, and I worked with her on it daily. It was the breakthrough we needed. I would bounce her on it, which she loved, and then lay her back and have her pull herself up like doing stomach crunches. Advancing had two benefits. Improved muscle tone and increased verbalization. During the activity, we were given weekly assignments of exercises which also seemed to help. She was crawling and pulling up all over the house. It was recommended that we get her high top sneakers to give her a better base for standing. She seemed to stand for longer periods with the added stability of the shoes, I started taking her to a pool for more exercise. One of her doctor said that water activity is one of the best exercises for cardiac kids. We also enrolled in an exercise class in a little gym once a week. This added physical play, an interaction with other Children. Her same age was really helpful to her. She watched the others very intently. Six months of therapy seemed to fly by, and the second evaluation was stunned when Hannah was 23 months old. As with the 1st 1 the therapist came to our home for the tests. The same two tests were performed but changed to be aged appropriate. The parent interview and observation periods were also done because she was not walking. The motor skills test placed her at the 11 to 12 months age, and her speech skills were not up to her age group either. When mobility is lessened, it can hinder speech development again, it seemed we were at small step point progress. Her therapy was put on hold until after the completion of her final heart surgery. The Fontane, two months after Hannah Spon Tan, she started back with the therapy and also started attending a speech therapy playgroup. Her babbling increased tremendously, and we started adding some signing. The doctors agreed with our current course of treatment and therapy and speech playgroup. We were doing the best things possible for her. Right now, I really needed that affirmation. What surprised us was his insistence that we emphasize her speech therapy over her physical therapy after he explained the importance of communication in daily life. This made sense. We just not have thought that far ahead. We had already noticed some frustration in Hannah's face when she tried to get a point across our wanted something and we didn't know what she was saying. As we were leaving his office, he reminded us that time with a therapist is important. But the parents are the real therapist for their Children, and an enriching environment with lots of simulation was crucial for her development. A few years from now, when I'm chasing a screaming Hannah down the aisle of the grocery store with a bag of cookies or down a ski slope, yelling for her to slow down, we'll look back on her delayed start. I wonder what the big deal was. And this concludes this episode of heart to heart with Anna. Please come back next week. Until then, please find unlike us on Facebook. Check out our website heart to heart with Anna. And remember, my friends, you are not alone. Thank

spk_2:   51:17
you again for joining us this week. We hope you've been inspired and empowered to become an advocate for the congenital heart defect community. Heart to heart With Anna with your host Anna Gorsky can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week.