Episode 115 | Megan’s Story: A Son with Williams Syndrome

Podcast Show Notes

Today I’m talking with Megan, who is the mother of three wonderful children. Her first was born with a rare genetic condition called Williams Syndrome. They did not discover this syndrome until he was five months old, and you will hear in her story how those first five months felt like five years. Megan is also a social worker, and she has developed a program that we will talk about at the end of the interview.

In this episode, we talk about…

 

[1:53] Megan’s family

Megan is a social worker and she and her husband live in Nashville, TN, with their three children. Her oldest is William, and he has a genetic condition called Williams Syndrome – the name is totally a coincidence. Her daughters are almost 4 and 15 months old. 

[3:24] Williams Syndrome

Williams Syndrome is a genetic condition marked by a spontaneous deletion of the seventh chromosome. It is a fluke that happens at conception, but they didn’t find out about their son’s condition until he was about five months old. It felt like five years as they were trying to figure out what was going on with their son.

[4:30] Megan’s pregnancy and delivery with her son

Megan’s pregnancy with her son was uneventful. She was induced at 39 weeks because he was measuring small. The OB thought it might have been a growth restriction or he wasn’t getting enough nutrients, so it would be better to get him out. It was a long delivery because he was not ready. It took about two days for him to come, and Megan and her husband were so exhausted that they don’t even really remember how their son ended up in the NICU. He spent a week there, and they were monitoring him for some glucose issues. 

[6:21] Getting a diagnosis of Williams Syndrome

At the same time, the family was preparing for their move down to Nashville from Chicago. When they got there, William was six weeks old. Going to a new pediatrician gave them a new perspective. He was not sleeping on his own at night, and he was vomiting a lot. He seemed uncomfortable. The pediatrician found a heart murmur, and sent them to a cardiologist at Vanderbilt. The cardiologist noticed some narrowing in the pulmonary artery.

As a mom, Megan always felt like something seemed off about her son. A lot of her relatives or friends seemed to dismiss things that seemed significant to her. When the cardiologist found the issue with his heart, they wanted him to come back in a few weeks for another echo. Babies are wiggly and it is hard to tell what is really going on. 

Eventually, William wasn’t smiling. That was the first milestone where Megan feels like people started to pay more attention to what she was seeing. They were referred to a geneticist where they did a blood test, and then they followed up at the cardiologist. It was discovered that William had a heart condition: stenosis of the supra aorta. That is very unique to Williams Syndrome, so the cardiologist shared that information. 

Williams Syndrome was on Megan’s radar, only in the sense that someone had mentioned it to her because they had a cousin who had it. There are some facial features that are distinct with Williams Syndrome, and so when it came up it almost seemed like they wished they hadn’t said it out loud. Megan Googled it, and she mentioned it to her husband who told her to stop Googling. In her heart, though, Megan thought that could have been it. By the time the cardiologist said something, Megan remembers squeezing her husband’s hand and thinking back on that. 

[13:45] Feeling lonely after getting the diagnosis of Williams Syndrome

As a mom, Megan felt really unsupported after receiving the diagnosis of Williams Syndrome. She asked the doctor for  brochures, or information about an association. The doctor didn’t have much information to share, and the pediatrician wasn’t sure what the next steps should be. 

Part of what makes it really hard to be a parent of a child with a disability is that so often when you receive the news there is an apology that comes with it. In hindsight, Megan feels like it wouldn’t have felt as scary if they were provided with more resources or were given hope through the reminder that their child was still their child. Feeling more supported when receiving the news, rather than just being apologized to, can make such a difference.

Once they had the diagnosis, Megan and her husband chose certain people in their family to tell first. They helped share the news with everyone, because they both have pretty big families. Eventually they also sent a larger email and shared on social media. They felt like they had to hit the ground running to set up early intervention, and they suddenly had a huge list of specialists that they had to see because of the different ways Williams Syndrome impacts the body. 

[21:24] Family support and coping as parents of a child with special needs

Family members wanted to make sure that they felt supported, so they often shared their professional expertise when they thought it could be helpful. As Megan is a social worker with a mental health background, she decided to see a marriage and family therapist with her husband. It was hugely helpful for them, and going to the sessions helped them to share with a neutral party about how they were processing the situation. They learned together, and they figured out how to create boundaries and trust each other.

[23:36] Living with Williams Syndrome

They have a long list of specialists they see, including a cardiologist, endocrinologist, nephrologist, and gastroenterologist. They saw a neurologist for a while, as he has visual and auditory issues that need to be monitored. He hasn’t had any surgeries yet, so now they live in this world where they are anxious about the possibilities. As he starts to get older, there is a lot of research that shows the possibility of the heart changing or needing surgery in other areas. There is a higher risk with anesthesia for individuals with Williams Syndrome. While things seem to be well-managed right now, they are also on edge waiting for the next thing.

[26:52] How Megan takes care of herself day to day

Megan likes to run, and she tries to make time for exercise. Her other children are gifts to her as well, and it has been helpful to have varied parenting experiences. Megan also describes working through the anxiety around leaving her son in the care of anyone else, but it is so important because it has allowed her the time to take care of herself. If she is going to be the best mom that she can be, she has to take care of herself first. Even going and getting a haircut, or having someone hold him in another room while she took an hour of alone time, was helpful.

[30:03] An update on Megan’s son and what he has taught her

William has been in an inclusive preschool for four years, and he has really excelled. Now they are preparing for him to go to public kindergarten, which will present some new challenges. He has made such strides with language, and he loves music so much. Often a characteristic of Williams Syndrome is a strong affinity for music, and he can memorize songs with ease. Megan also observes that he really “feels music” in a unique way. 

William also loves people, to the point where he will cry if a neighbor leaves after playing with him all afternoon. He loves his sisters, and hates them at the same time. It is fun for Megan to watch those sibling relationships grow and change.

[32:43] Tulip Families: The program Megan developed for families navigating disability and neurodiversity

Through all of these experiences, Megan realized that there was a place for her to use her personal experience and her professional skills as a social worker. She had longed to find a provider who could centralize care for William – raising a child with a disability when you’re encountering complex medical needs, navigating the education system, finances, government resources, your own family unit, mental health, and all that comes with it. There just isn’t always enough time in everyone’s day to connect you to the next resource, help with planning for the future, or take time to walk through navigating the world of disability or neurodiversity.

Megan is hoping to be that type of provider for families in Nashville. A doctor could refer a family to her after receiving a new diagnosis or while preparing for a transition. She wants to guide families and to show them how she has managed it personally, in addition to building professional networks to connect people to community resources.

The program is called Tulip Families, and she got the name from Emily Perl Kingsley’s poem ‘Welcome to Holland’. It is a beautiful poem that describes the experience of receiving a diagnosis for your child. When you’re preparing to have a baby, it’s like you’re planning for a trip to Italy. When you land, you realize you have actually landed in Holland. It’s not that Holland is a terrible place, but it is a different place. There are beautiful things there, like tulips. That is where Megan got the name.

Part of her mission is also helping providers connect with each other, so she would love to work with any and everyone who wants to serve their patients and serve families beyond their session or classroom time as well.

CONNECT WITH MEGAN

Website

Instagram

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

Today I’m talking with Megan, who is the mother of three wonderful children. Her first was born with a rare genetic condition called Williams Syndrome. They did not discover this syndrome until he was five months old, and you will hear in her story how those first five months felt like five years. Megan is also a social worker, and she has developed a program that we will talk about at the end of the interview.

In this episode, we talk about…

 

[1:53] Megan’s family

Megan is a social worker and she and her husband live in Nashville, TN, with their three children. Her oldest is William, and he has a genetic condition called Williams Syndrome – the name is totally a coincidence. Her daughters are almost 4 and 15 months old. 

[3:24] Williams Syndrome

Williams Syndrome is a genetic condition marked by a spontaneous deletion of the seventh chromosome. It is a fluke that happens at conception, but they didn’t find out about their son’s condition until he was about five months old. It felt like five years as they were trying to figure out what was going on with their son.

[4:30] Megan’s pregnancy and delivery with her son

Megan’s pregnancy with her son was uneventful. She was induced at 39 weeks because he was measuring small. The OB thought it might have been a growth restriction or he wasn’t getting enough nutrients, so it would be better to get him out. It was a long delivery because he was not ready. It took about two days for him to come, and Megan and her husband were so exhausted that they don’t even really remember how their son ended up in the NICU. He spent a week there, and they were monitoring him for some glucose issues. 

[6:21] Getting a diagnosis of Williams Syndrome

At the same time, the family was preparing for their move down to Nashville from Chicago. When they got there, William was six weeks old. Going to a new pediatrician gave them a new perspective. He was not sleeping on his own at night, and he was vomiting a lot. He seemed uncomfortable. The pediatrician found a heart murmur, and sent them to a cardiologist at Vanderbilt. The cardiologist noticed some narrowing in the pulmonary artery.

As a mom, Megan always felt like something seemed off about her son. A lot of her relatives or friends seemed to dismiss things that seemed significant to her. When the cardiologist found the issue with his heart, they wanted him to come back in a few weeks for another echo. Babies are wiggly and it is hard to tell what is really going on. 

Eventually, William wasn’t smiling. That was the first milestone where Megan feels like people started to pay more attention to what she was seeing. They were referred to a geneticist where they did a blood test, and then they followed up at the cardiologist. It was discovered that William had a heart condition: stenosis of the supra aorta. That is very unique to Williams Syndrome, so the cardiologist shared that information. 

Williams Syndrome was on Megan’s radar, only in the sense that someone had mentioned it to her because they had a cousin who had it. There are some facial features that are distinct with Williams Syndrome, and so when it came up it almost seemed like they wished they hadn’t said it out loud. Megan Googled it, and she mentioned it to her husband who told her to stop Googling. In her heart, though, Megan thought that could have been it. By the time the cardiologist said something, Megan remembers squeezing her husband’s hand and thinking back on that. 

[13:45] Feeling lonely after getting the diagnosis of Williams Syndrome

As a mom, Megan felt really unsupported after receiving the diagnosis of Williams Syndrome. She asked the doctor for  brochures, or information about an association. The doctor didn’t have much information to share, and the pediatrician wasn’t sure what the next steps should be. 

Part of what makes it really hard to be a parent of a child with a disability is that so often when you receive the news there is an apology that comes with it. In hindsight, Megan feels like it wouldn’t have felt as scary if they were provided with more resources or were given hope through the reminder that their child was still their child. Feeling more supported when receiving the news, rather than just being apologized to, can make such a difference.

Once they had the diagnosis, Megan and her husband chose certain people in their family to tell first. They helped share the news with everyone, because they both have pretty big families. Eventually they also sent a larger email and shared on social media. They felt like they had to hit the ground running to set up early intervention, and they suddenly had a huge list of specialists that they had to see because of the different ways Williams Syndrome impacts the body. 

[21:24] Family support and coping as parents of a child with special needs

Family members wanted to make sure that they felt supported, so they often shared their professional expertise when they thought it could be helpful. As Megan is a social worker with a mental health background, she decided to see a marriage and family therapist with her husband. It was hugely helpful for them, and going to the sessions helped them to share with a neutral party about how they were processing the situation. They learned together, and they figured out how to create boundaries and trust each other.

[23:36] Living with Williams Syndrome

They have a long list of specialists they see, including a cardiologist, endocrinologist, nephrologist, and gastroenterologist. They saw a neurologist for a while, as he has visual and auditory issues that need to be monitored. He hasn’t had any surgeries yet, so now they live in this world where they are anxious about the possibilities. As he starts to get older, there is a lot of research that shows the possibility of the heart changing or needing surgery in other areas. There is a higher risk with anesthesia for individuals with Williams Syndrome. While things seem to be well-managed right now, they are also on edge waiting for the next thing.

[26:52] How Megan takes care of herself day to day

Megan likes to run, and she tries to make time for exercise. Her other children are gifts to her as well, and it has been helpful to have varied parenting experiences. Megan also describes working through the anxiety around leaving her son in the care of anyone else, but it is so important because it has allowed her the time to take care of herself. If she is going to be the best mom that she can be, she has to take care of herself first. Even going and getting a haircut, or having someone hold him in another room while she took an hour of alone time, was helpful.

[30:03] An update on Megan’s son and what he has taught her

William has been in an inclusive preschool for four years, and he has really excelled. Now they are preparing for him to go to public kindergarten, which will present some new challenges. He has made such strides with language, and he loves music so much. Often a characteristic of Williams Syndrome is a strong affinity for music, and he can memorize songs with ease. Megan also observes that he really “feels music” in a unique way. 

William also loves people, to the point where he will cry if a neighbor leaves after playing with him all afternoon. He loves his sisters, and hates them at the same time. It is fun for Megan to watch those sibling relationships grow and change.

[32:43] Tulip Families: The program Megan developed for families navigating disability and neurodiversity

Through all of these experiences, Megan realized that there was a place for her to use her personal experience and her professional skills as a social worker. She had longed to find a provider who could centralize care for William – raising a child with a disability when you’re encountering complex medical needs, navigating the education system, finances, government resources, your own family unit, mental health, and all that comes with it. There just isn’t always enough time in everyone’s day to connect you to the next resource, help with planning for the future, or take time to walk through navigating the world of disability or neurodiversity.

Megan is hoping to be that type of provider for families in Nashville. A doctor could refer a family to her after receiving a new diagnosis or while preparing for a transition. She wants to guide families and to show them how she has managed it personally, in addition to building professional networks to connect people to community resources.

The program is called Tulip Families, and she got the name from Emily Perl Kingsley’s poem ‘Welcome to Holland’. It is a beautiful poem that describes the experience of receiving a diagnosis for your child. When you’re preparing to have a baby, it’s like you’re planning for a trip to Italy. When you land, you realize you have actually landed in Holland. It’s not that Holland is a terrible place, but it is a different place. There are beautiful things there, like tulips. That is where Megan got the name.

Part of her mission is also helping providers connect with each other, so she would love to work with any and everyone who wants to serve their patients and serve families beyond their session or classroom time as well.

CONNECT WITH MEGAN

Website

Instagram

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

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