COVID, Down syndrome, & Our Experience

I'm still in a bit of shock over what has transpired in the past couple of weeks. My body is worn out. I haven't been sick, but I have been caring for those who have been. Our supply of nebulizer vials and ibuprofen is critically low. The amount of bleach, lysol, and disinfecting wipes I have used in the past week is quadruple my norm. It's been a wild few weeks, and I am grateful we are through the storm of COVID-19. 

During the pandemic, we have felt it was important to try to protect our teenage daughter, Jaycee. Jaycee has Down syndrome, a twice repaired heart defect, asthma, obstructive sleep apnea (treated with bi-pap since age 3), and other lung problems. She's been on a ventilator twice for a cold virus; any respiratory illness has historically been difficult to manage at home. 

With this in mind, we have always weighed risks for her- not just during the pandemic- but any time in her life. There is a delicate balance in keeping her safe and having a life. We have had to find this balance again and again as health issues or respiratory viruses have popped up. We don't want Jaycee to be sheltered at home for long periods of time, and we don't want to put her in harm's way, if it can be avoided. With COVID-19, there seemed more at stake when making these decisions compared to other health concerns in the past. 

We haven't exactly hidden ourselves away in the past 10 months, but we haven't thrown caution to the wind. We considered how we could do some things while minimizing Jaycee's risks. We taught Jaycee early on how to wear a mask, because she had necessary medical appointments in the spring of last year. We initially practiced short outings with her using her mask. It was a struggle at first, but eventually she tolerated the mask longer and longer. She's a pro with it now, but her drool doesn't always make it easy. I have always carried sanitizer with us but use it even more frequently during the pandemic. We used her wheelchair during outings so we could limit what she could touch and position her where we wanted her. We tried to lessen her risk; not keep her at home all the time. 

In August, she had the opportunity to attend school in-person. We felt it was important for her to attend. School is her social life, where she gets her therapies to treat her delays, and where her educational needs are met. School makes her happy; she was extremely unhappy and confused with remote learning. My son wanted to attend school in-person as well. By August, my husband and I were working outside of the home. We figured at some point, we would have a run in with the virus given that we were all going out almost daily. 

Out of nowhere, my son suddenly developed a cough one night in January. It came on so quickly that I didn't suspect anything serious. He's had many colds in his life, and this seemed like those. The next day, we took him for a COVID-19 test and paid for an additional rapid test fully expecting it would be negative. The positive result put me in a state of shock and the entire family in quarantine. We had unknowingly been around someone somewhere with COVID-19. We couldn't trace the virus, but sometimes that is the case. 

With the positive test, I found myself facing what I had feared for months. I had read some articles on the severity that could occur with Down syndrome and COVID. I also knew Jaycee's own medical history, which didn't give room for much optimism. However, Jaycee has been on a long healthy streak, and her body is stronger than its been in years. 

On day 2 of our quarantine, Jaycee woke up with loose stools. She constantly battles constipation, so I knew it was a bad sign. If she felt poorly prior, she had not made that known. I messaged a few of my strong Christian friends who gave me encouragement and calmed some of my fears. It was no surprise that Jaycee tested positive that day, as well as my husband who also developed symptoms. 

We contacted Jaycee's pulmonologist immediately. We started our "yellow" zone medicines and interventions (increased nebulizer treatments, cough assistance, airway clearance) on the first day of her symptoms as we tried to stay ahead of the problem. We were told to check if Jaycee qualified for the monoclonal antibody treatment in our state. With a quick google search, we found our state's guidelines and who they considered "at-risk." It appeared Jaycee qualified, but it took our local doctor to work out the details. 

On the 3rd day of her symptoms, Jaycee received the antibody infusion at our local hospital. The infusion was an outpatient procedure that took a little over an hour to run intravenously with an hour of monitoring afterwards. Jaycee handled the infusion well, and I took comfort knowing she had this treatment working in her favor. 

Knowing COVID-19 has a wide variety of symptoms, it was hard to predict what it would look like in Jaycee. I felt like I was sitting around and waiting to see if she stay on a mild course or get worse. I tried to fight off anxiety and stress. It all seemed to hit me at night, and I had great difficulty falling asleep and staying asleep. Part of me felt like I needed to watch Jaycee's pulse oximeter monitor all night because that is historically when she has her greatest difficulties. Ten months of hearing the worst COVID-19 stories were in my head making me feel like I needed to watch Jaycee all day and all night, which isn't humanly possibly. Her heart rate and oxygen saturation numbers bounced around more than usual at night, but nothing too alarming ever happened. 

With her verbal speech limited, I am not sure if Jaycee felt strange, achy, or lost her taste or smell. She rarely voices pain or anything of that sort. I could tell her voice sounded different for a few days. Her appetite didn't change at all. She ran low fevers of 99-100 for a few days. She often looked tired in the afternoon and evenings and slept 10-11 hours a night. A few days after her infusion, she developed a small cough. Her breathing had changed somewhat, noticeable to me because I have had to analyze it for years. But overall, the sudden decline or worsening respiratory symptoms I feared would come simply didn't. For that, I am so grateful. 

I adjusted her medications based off her oxygen saturation numbers and apneas tracked on her monitor. By the time her 10 days of quarantine were over, she was well enough to return to school (with clearance from the health department). I thank God that we were able to get her an early treatment and that Jaycee made a quick recovery. It really was an answered prayer. 

As for the rest of the family, we all faired pretty well too. My son had a few days of coughing and snot, and then quickly felt much better. My husband had a rough time having many symptoms at once. We carefully monitored his breathing for a few days before calling the doctor to get medications that seemed to slowly help. He isn't completely back to normal yet, but he's getting there. I felt I developed some minor symptoms after the rest of my family were positive. However, I tested negative not once but twice. It's a little perplexing as I obviously had a high exposure to the virus taking care of everyone in my home. As I write this, I'm left in quarantine while the rest of my family is out. I am tempted to complain about being in a long quarantine, but I have nothing to complain about. Our family is blessed that we all recovered and had no major complications. 

I share our story for other families who have a loved one with Down syndrome. Prior to talking to our pulmonologist, I had no idea that antibody treatments would be available for her. I want to make sure other families are aware that this may possibly be an option for your family member with Down syndrome or other health conditions. If your family has a run in with this virus, I hope you can have a good outcome too. 

Being "Mom" to My Daughter with Down syndrome

My daughter can say "mom" in a half-dozen ways. 

"Mom" is the name she calls when she sees me in the morning. Jaycee seldom wakes up grumpy, unlike myself. 

She giggles out a "mom" when I do something that amuses her. It could be the funny way I sing a Disney song or a family joke that I know will get her to laugh. 

Sometimes, "mom" is a call for help. The help Jaycee needs may be easy to spot or I may have to decipher what's wrong. 

"Mom" can be said in a frustrated tone. Jaycee may not understand what's happening in a particular situation, and I need to try to explain something to her. 

She has a scared voice that she uses with my name. "Mom" may mean I need to reassure her that everything will be fine. 

In the past year, Jaycee has developed a "mom" said in teenager tone. If I do something to embarrass or annoy her, she lets me know in the specific tone she says my name. 

The first few years of her life, I barely heard any words come from my daughter. Jaycee first called me "mama" much later than most children. Her tiny voice was so sweet and hearing my name even sweeter. 

I am her mom. It's a role I adore and take seriously. I haven't always known how to simply be her mom while navigating all of her needs. It's been a complicated journey. 

When my daughter was born with Down syndrome 14 years ago, I was a scared twenty-something, first time mother. I didn't have much confidence in my child rearing capabilities at that time period; I certainly didn't think I was equipped to tend to Jaycee's unique needs. It is no exaggeration to say that her care was extremely intense for the first few years. At first, the primary concern was her heart defect that needed two open heart surgeries, oxygen at home for a few months, and medications for awhile. My calendar became filled with specialty appointments for her heart and other medical conditions. I had barely ever stepped foot in a hospital prior to this; I was suddenly forced to learn the ropes quickly. 

Back then, I was a new mother who wanted nothing more than her daughter to be healthy. Her care required me to do a bit of nursing at home. Being her "nurse" was something I was unprepared to do. I did not know the basics like filling up a medicine syringe let alone more difficult tasks like watching for signs of worsening congestive heart failure. It was overwhelming, and I second-guessed myself often. I felt the weight of being responsible for her little life. If she wasn't gaining weight or keeping down her medications, I felt it was my fault. Being Jaycee's mom meant doing the medical stuff that sometimes made me feel stressed, uncomfortable, and worried. I did all that was required of me and then some, but my motherhood encompassed medical aspects that many moms do not understand. 

It was a heavy burden that I tried to carry far too long. I felt that if I did everything right, I could achieve her healthiest self. What I didn't understand at the time was that there were many variables out of my control. My parenting and nursing skills couldn't prevent all the issues with her eyes, heart, lungs, and ears. Finally understanding that was freeing in a way. 

Early on when my thoughts were consumed with medical issues or basic baby care (like those months of lovely round-the-clock feedings), her developmental needs kept me busy too. We started her in home therapies when she was two months to address her low muscle tone and delays. It was a blessing and a curse to have home therapies. I loved having access to well educated therapists in our home, but I put way too much pressure on myself to address her delays in our mother-daughter time. I became my daughter's therapist, which wasn't always a good or noble thing. Being a speech-language pathologist who works with children only intensified the blurry lines I created between assisting my child in her development and personally trying to fix her delays. Therapy was part of my motherhood experience but sometimes it became too much of my focus. 

These are examples of how I struggled to find balance in being mom to Jaycee. I let aspects of her care take center stage. It was hard for me to simply sit down in a rocking chair, hold my baby, and be in complete peace. We had those moments; don't get me wrong. Her diagnoses and extra needs often kept my mind and actions busy with a running lists of concerns, to-dos, and fears. 

I'm so thankful for personal growth because I eventually found the balance I desperately needed. I discovered how to take care of my daughter's medical needs and help her achieve new skills while being a fun and loving mother. I have become the mother that my child needs, loves, and appreciates. When she calls out for "mom," I am there, ready to help her with whatever she needs. 

I'm happy to do all of that for her. She's my daughter. I'm her mom. There's nothing more natural than that. 

October is Down syndrome awareness month. Each year, I try to spotlight some aspect of Down syndrome to bring understanding to those not personally acquainted with an individual with Down syndrome. I encourage you to learn about Down syndrome, appreciate those with differences, and celebrate the lives of those with the diagnosis.  

My Book: Badges of Motherhood SNEAK PEEK

I've dropped some hints over the past few months about the book I have been writing. I am stoked to announce that it is finished! I have spent years writing these stories that have impacted me the most as a mother. Sometimes, my daughter's health issues put the book on hold for months at a time, but I began working on the book again when life settled down. It has been a dream of mine to see this thing out to completion, and I'm excited that it is now accomplished.

Badges of Motherhood: One Mother's Story about Family, Down syndrome, Hospitals, and Faith is the story of my life as a mother over the last 12 years. If you are a regular here on the blog, you know a little about my life and my children. If you don't, let me fill you in. I am the mother of two children, Jaycee and Elijah. Jaycee has many diagnoses including: Down syndrome, a twice repaired heart defect, Wolff-Parkinson-White syndrome, GERD, asthma, obstructive sleep apnea, and recurrent pneumonia. When she gets a simple cold virus, it attacks her lungs in unpredictable ways. I have been at her side through many hospital admissions and stays in the Intensive Care Unit.

As you can imagine, the events I have lived through as a mother have impacted me spiritually and emotionally. I have had to understand my Christian faith in new ways as I watched my sick child suffer again and again in the hospital. I have had to work through stress, anxiety, and fear from certain diagnoses. When people said or did things that made our situations worse, I have had to choose forgiveness. My book delves into all of these topics.

In Badges of Motherhood, I move the story from one chapter to the next using the concept of badges. The badges represent the especially rewarding and challenging experiences or emotions a mother has with her child. The first chapter in the book is the Delivery Badge, which tells the story of the births of both of my children. Chapter two is the Diagnosis Badge. In this chapter, I recount all of Jaycee's major diagnoses by sharing how they came about, who gave the diagnosis, and how her life and mine changed as a result of them. From there, we move to the Hospital Care Badge where I describe what it's like caring for a child in the hospital.

In all, there are 17 chapters or badges in the book. The most difficult chapter to write was the Intensive Care Unit Badge followed closely by the Miscarriage Badge. The most revealing chapters into my thoughts and emotions can be found in the Faith Badge and the Stress Badge. Not all of the chapters are serious and intense. The Wish Badge describes Jaycee's wonderful experience through Make-A-Wish, and the Child Baptism Badge tells how I successfully prepared Jaycee for baptism at church.

It is true, Badges of Motherhood, is as much about my daughter's story as it is mine, but our lives are connected and intertwined. She is the person experiencing the illness in the hospital bed, and I am the helpless mother wondering how I can help her. I can't imagine how she has felt as she has endured everything in her life, but I do know how I have felt as her mother.

I know that many people cannot imagine a mothering experience like mine. But, I am convinced that most mothers have their own badges too that make them who they are. It is my desire that readers can reflect on their own lives and appreciate their own badges. I also hope that Jaycee's miraculous story inspires them in some way.

Badges of Motherhood is only available on Amazon in both an eBook version and a print version. The print version is available right now. The eBook will be available November 2nd, but you can pre-order it today too! There are a few more pictures in the eBook version that aren't in the print version, but all the written content is the same. Just follow this link: BADGES OF MOTHERHOOD
Just for you- here's a look at the book's full introduction:

The signs are all there: you get less sleep, your day is centered around a tiny version of yourself, and you look forward to Mother’s Day. Yes, you are a mother. Maybe motherhood has been everything you have dreamed about. Maybe it was nothing like you thought it would be. Still, you find yourself in this unique, yet timeless, role of a mother.

Motherhood has only one requirement: to have a child. That child may have come through natural means, adoption, or marriage. No matter how the child became yours, a new world has come to you that you may have otherwise not have known so intimately.

Once a woman has entered motherhood, she begins learning new skills and having new life experiences, which are referred to as “badges” in this book. These badges tell the story of the achievements and challenges of the mom and her child’s care. The badges are symbolic of particularly special times in the mother-child relationship. Some of these badges are kept throughout a mother’s life, no matter how much time passes. Other badges can be discarded or lost.

There are some badges that all moms will go through like the Delivery Badge. There are some badges that only some moms will receive, such as the Diagnosis Badge. Some badges are highly anticipated (i.e. Child Baptism Badge) while others are not (i.e. Hospital Care Badge). Some badges can be earned multiple times for separate events or for each child, but some badges are earned only once in a mother’s life.

In all, the badges represent triumphs in the mother’s life, hardships that have been overcome, skills that were necessary for those moments, and the basic journey of a mom raising her child.

Since 2006, I have been acquiring several badges while parenting my two children. I had no idea just how much my life would change when I became a mother. Parenting has provided the most fulfilling, beautiful, and challenging moments of my life. I hope you enjoy reading about some of my badges and can value the badges you have earned in your journey as well.

Thanks for reading today's post. If you have a question for me, submit it in the comments below. (Comments are moderated, so they will not show up immediately once submitted.) Please feel free to share this post on Facebook, Twitter, etc. I hope you enjoy reading Badges of Motherhood!

Diagnosed: Birth -VS- Childhood

I have been doing some thinking (too much probably) about my children and their paths to diagnosis. If you have ever read this blog, then you'll know that my daughter Jaycee was diagnosed with Down syndrome at birth 11 years ago. Just a few months ago, my son was diagnosed with Ehlers-Danlos syndrome at age 7. (If you missed the post on his diagnosis, you can read it here.)

Photo Credit: Short Photography

I responded much differently to each of their diagnoses. After Jaycee was born, I was in complete shock. For 9 months, I thought I was going to have a healthy baby girl. Learning at birth, she had Down syndrome, an AV canal heart defect, and would need an open heart surgery...it was too much! I had a very hard time adjusting to the diagnosis.

With Elijah, the news of a diagnosis was sort of a blessing. I began having some small concerns with him around age 2 when he couldn't run without falling. He ended up in physical therapy and occupational therapy for his low muscle tone for years. There were times when I would be very confused about some of his problems. Why did he have low muscle tone? Why is he "uncomfortable" sitting? Why did his toes bend in funny ways?

I researched some of his problems and ended up with no answers. There were times I was really fixed on finding an answer. There were other times when I would tell myself that whatever was wrong with him must not be too bad. After all, he was age level in academics.

I took him to a few specialists looking to see if there was an underlying reason for his motor delays and muscle issues. The first orthopedic doctor completely blew me off. I mean completely. I was treated like an over-reacting parent. I was told his problems were minor and weren't really impacting him. I disagreed in some respect because he did need both physical and occupational therapy after standardized testing showed severe delays in his motor skills.

The second orthopedic person I took him to a couple years later examined Elijah for less than 2 minutes. He told me he was fine. His gait (the way he walked) was strange, but nothing to worry about.

I was done.

Let me tell you something. There's nothing worse than having some legitimate concerns about your child, and a doctor can't even spend 5 minutes checking into things before he determines there's nothing wrong.

By the time I took Elijah to a podiatrist to look into some shoe inserts, I was not expecting anything earth shattering. This man took an interest in my son. He wanted to hear about some of his problems because he noticed something with him immediately. In less than 5 minutes of watching him walk, run, jump, and move his body, he told me he suspected Ehlers-Danlos syndrome. (We later saw a genetics doctor who confirmed the diagnosis.)

So you see, my son's diagnosis was different. It came after years of questions and second-guessing myself. After knowing what the problem was, so many things made sense. The information was helpful, and it let me finally understand my son.

The future of chronic pain and joint problems in store for Elijah was depressing. That part of the post-diagnosis reaction was similar to learning about Jaycee's Down syndrome and associated intellectual disability. The parts of the diagnosis that are predictive in nature were tough for me for both kids. There are some things about each diagnosis that sounded scary. Unfortunately, time is the only thing that reveals how a diagnosis will manifest in an individual...not information in a book.

I handled Elijah's diagnosis easier in some ways. I had 7 years with my son before he was given a life-long diagnosis. I had time to see my son's personality and strengths. This kid was memorizing sight words at age 3 and begging to sit in his sister's home therapy time with me. He's the kid with a love for presidents, state capitals, and state capital buildings. He loves playing guitar and beating on his drum. Before Ehlers-Danlos syndrome, there was Elijah. I knew that sweet boy well. After his diagnosis, he was the same kid with a different possible future.

It was different for Jaycee. She was born and Down syndrome was there immediately. I had no time to get to know her. Down syndrome was a dark shadow cast over her for so long. I couldn't see past it. Maybe it was because the NICU doctor literally pointing out everything on her body that indicated Down syndrome. I looked at her, and I saw only Down syndrome initially. She was also a baby with a heart defect. She slept and slept and slept those first few months. Her personality, preferences, and opinions became known over time. Jaycee was in there all along, but I knew Down syndrome more than I "knew" Jaycee at first.

Getting a diagnosis for your child at any time is hard. It's an emotional roller coaster, and it changes the life course for the parent and child. But, a diagnosis isn't the totality of a person. There's an individual person with a diagnosis. That person has a personality, attitude, opinion, and my love. That love and bond is stronger than any diagnostic term. I knew after Jaycee that we could get through any present and future diagnoses, because our love was great. By the time Elijah's diagnosis came around, I knew this well. I knew I could face that future with my son, because love has a power to want to conquer all obstacles.

How I Save Lives

I'm not a nurse. I'm not a doctor. I'm an ordinary person, yet I may have saved a life.

How?

Through blood donations, I have been able to help those in need. Since today is World Red Cross Day, there is no better day to share how the American Red Cross has touched my family. The Red Cross has many important humanitarian causes, but blood donation is the one that has personally affected me.

My need to do something good for the world led me to give my first blood donation in my twenties. I attended a church that was hosting a blood drive. I was able to speak with people who had given blood several times in order to calm my fears. Needles don't necessarily bother me, but I wasn't excited about that part. I had heard stories of people getting sick or fainting afterwards too. I didn't want to pass out or have a bad reaction after donating. I let those fears keep me from giving blood for many years as I figured there were plenty of other people out there who were donating.

It went better than I thought it would. I felt slightly fatigued the rest of the night, but I was fine by the morning. It went so well, that I gave a couple of more times.

Then, I became pregnant with my daughter, Jaycee. That meant I was no longer able to donate blood until after the pregnancy. When Jaycee was born with a congenital heart defect, she needed open heart surgery at 3 months old. A blood transfusion was part of her recovery. Because someone donated blood, Jaycee was able to receive the blood she needed. It was then that I realized blood donation truly is needed to save lives of people, even tiny babies with a hole in their heart.

After that, I wanted to give blood, and I did a few more times.

Then life happened. I let almost 8 years go by without donating. I had many reasons why I didn't donate. Besides her heart defect, Jaycee had developmental delays associated with Down syndrome. This made life hectic with therapy and doctor's appointments for some time. I had another baby. I worked part time and rarely had a babysitter when the blood drives were taking place. I can give a list of excuses, but I will say that it just wasn't feasible for me in that stage of my life.

As my children got older, I decided I needed to start donating blood once again. It really is an easy process, and not everyone who is able to donate blood does. I have finally gotten to 10 donations!

Blood donations are important, and one day you might have a loved one who has benefited from a donation. If you are able to give blood, don't let your reservations stop you. It is even easier now with features like Rapid Pass, which allows you to do a good chunk of the screening questions on-line prior to going, and donation scheduling, which allows you to pick a time to donate rather than waiting in line for an unknown amount of time. To read through the eligibility requirements, please visit the American Red Cross website.

Hope to see you at the next blood drive!

You can read more about the history of World Red Cross day on this site.

Congenital Heart Defect Awareness: Jaycee's Story

I remember vividly walking into the NICU to visit my daughter the day after she was born. I was surprised to see there was a flurry of activity around my baby. Several doctors surrounded her tiny bed focused on a screen connected to something I could not see. A nurse showed me to a chair away from the action where I sat wondering what in the world was going on with Jaycee now.

Earlier in the day, several doctors told my husband and I that our baby had Down syndrome. Now, there appeared to be something else concerning. Soon, a female doctor broke from the pack and approached me. The young, blond doctor jumped right into telling me that my daughter had an Atrioventricular heart defect. Essentially, she had a hole in the center of her heart. Half of babies with Down syndrome have a heart condition, but not every heart defect requires surgical intervention.

Within a few days of her birth, she was in congestive heart failure and dealing with pulmonary hypertension. After spending 10 days in the NICU, my husband and I took Jaycee home.

Bringing home a newborn in heart failure meant our lives were a little different. Giving the medications Digoxin, Lasix, and Potassium became part of our daily routine. Getting these medicines down a newborn with an easy gag response and reflux proved difficult. Then there were the feedings, which were exhausting for both of us. Her suck was not strong at all. She tired easily and slept nearly all the time. Jaycee was overall so weak and tired that she literally could not cry. Instead she had a weak little noise that we determined was her version of a cry. At home, we had to find a balance between showing off our newborn while limiting her exposure to germs.

When Jaycee was 3 months old, she had reached 9 pounds which meant she was big enough for her open heart surgery. This was a bittersweet moment for my husband and I. We were ready for Jaycee's heart to be fixed so she could have a better life. But, we were scared of all of the rare but possible side effects from surgery. Handing your tiny baby over to a team of doctors knowing her body would be forever marked from the day was the moment we dreaded since we had gotten her heart diagnosis.

Despite our fears, Jaycee's surgery went absolutely perfect. We were amazed at how a little body can recover from a major surgery. The capabilities of doctors were astounding for us as hospital newbies. The idea that our daughter's chance at life was only due to the ability of these men and women committed to saving the lives of every child was not lost on us.

Jaycee in the hospital after her heart surgery

Today, Jaycee's heart is no longer our biggest concern, but it took awhile to get to that place. She did need another heart surgery at age 2 to fix some of the leaks in her heart left from the first surgery. Jaycee also had two heart ablations for Wolff-Parkinson White syndrome, which caused a tachycardia at age 5. Now, Jaycee has yearly cardiology appointments to monitor her leaks and slightly elevated pulmonary pressures, but the doctors are not anticipating any more surgeries.

Today, being Congenital Heart Defect Awareness Day, my husband and I would like to share our daughter's story of survival. When a heart diagnosis is made, there are many unknowns. We were worried about our daughter’s future and life. We are grateful those days are behind us. Our Jaycee is now a vibrant 11 year old with energy and an ability to scream and cry. For that, we are thankful!

Jaycee at home on oxygen after surgery

Personal note: Jaycee's heart surgeries were performed by Dr. Charles Huddleston. Her cardiologist, Dr. Mark Johnson, has been instrumental in her care as well. All of her heart care has been received at Children's Hospital in St. Louis. We are grateful for this hospital and all those involved.

Down syndrome and Heart Defects

I'll never forget how I helpless I felt when my newborn was diagnosed with a heart defect.

Ten years ago, I sat in the NICU in shock as I found out that my sweet baby Jaycee not only had Down syndrome but an AV canal heart defect. When I was pregnant with Jaycee, the grainy black and white ultrasounds were still the norm. This coupled with the fact that our ultrasound was around 18 weeks in to the pregnancy meant that my daughter's heart defect went unnoticed until she was born.

About 1/2 of babies with Down syndrome are born with a heart defect. Some of these will correct on their own, but others will need heart surgery.

Jaycee's heart defect was one that would not self-correct. A few days after birth, she went into congestive heart failure. Medications were started to help with the complications of heart failure. Jaycee had her first heart surgery at 3 months old. After the heart surgery, she needed oxygen for three months while her heart and lungs recovered. Due to small leaks that remained, Jaycee had to have a second open heart surgery again at age 2.

Jaycee's heart defect was always the scariest diagnosis for us. It was the one that could end her life prematurely and affect the quality of her life. It would also put a scar on her chest for the rest of her life.

At the time leading up to her first open heart surgery, my mind was all over the place. I was scared of so many things. I didn't want to lose her most of all. But, I also looked ahead in the future. I wondered how I would explain the scar on her chest to her. During her time in the hospital, I made sure and took pictures that I could form into a small book for her.

Title page of Jaycee's heart book

A page from her heart book

Fortunately, most of my fears about Jaycee and her heart never came to pass. She is 10 years old now and receives yearly heart echos to monitor her mended heart. She has never questioned her scar but with her limited speech she might not. We have used the book to explain Jaycee's scar to her little brother. This book was also used in a presentation I did at Jaycee's school for the Jump Rope for Heart kick-off.

I feel blessed that we live in a country with access to wonderful medical care and doctors with the abilities to help our children with Down syndrome live longer lives.



For more on Jaycee's heart surgeries, read:
A Heart Surgery: Part 1

A Heart Surgery: Part 2