Nisha Gutierrez-Jaime

@nisha-gutierrez-jaime | staff
Nisha Gutierrez-Jaime is a journalist, wife and mommy to twin boys and a CHD Baby Heart Warrior. She writes about prematurity (her boys were born at 27 weeks) and her baby girl's congenital heart disease, Tetralogy of Fallot. Nisha is big on faith and family and believes the little things in life are the most important.

How My Lack of Body Awareness Makes People Uncomfortable

One of the most awkward and most misunderstood parts of having a learning disability is my lack is my lack of body awareness. The difficulty of how I move leaves other people to wonder what is wrong with me. Others have thought I was drunk, had a stroke, or other physical disabilities. Some people have been cruel and told me that my gait is creepy or have said unkind things. Other people didn’t want to be around me because of my lack of grace. Many people think that lack of eye hand coordination is only a factor in playing sports or in gym class. But lack of motor control extends from athletics into the school, home and the community.  One area that I had a hard time with was understanding personal space. I can remember walking too close to people when in public at the mall and a person saying, “There’s plenty of room over there.” I also have challenges with letting people pass by me in a hallway. I don’t pick up on the cue if I should let the person pass or move forward. If the person moves forward, I often move towards them. When I don’t move, people often look at me oddly. Lack of body awareness often makes me feel like I am in the way. I have blocked exits and television screens. I have had angry and frustrated people stare or make rude comments to me. I also have a hard time with anticipating the movements of a crowd. Once I was part of a circle activity and didn’t realize the circle was widening, leaving me in the middle. One of the groupleaders who didn’t like me told me that “you’re not the center of the circle.” Grace is also not my forte with dancing because I am unable to count beats and have two left feet. There was a guy who had an issue with this. He took ball room dance lessons and couldn’t understand why I struggled with it. I also attended a wedding and I caught the bouquet. He wouldn’t try to catch the garter. He also refused to dance with me. He told me I was a horrible dancer and said it was set up so that I caught the bouquet. A friend told me that he wasn’t the guy for me and said someone would come around that thought the way I danced was cute. My husband loves to take me in his arms and dance with me. My lack of body awareness is not based solely on having a learning disability. My feet turn in when I walk due to how I was positioned in the womb. A failed surgery didn’t fix my feet because the issue is in my hips. Having Scoliosis also didn’t help with my body awareness. People were always telling me to walk straight or not to hunch my back. The curved spine and turned in feet don’t cause me pain. I have also grown used to anomalies, that I don’t realize that it’s not typical to move this way. People have even blamed my shoes for my difficulties with movement. I have fallen in heels, flats, sneakers and my bare feet. Finding the right pair of shoes may take more work due to my unique feet, but no shoe will cure my disability. I may move differently, but I don’t let that stop me from what I want to do. I may not be good at competitive sports, but I can do group exercises classes such as boot camp or barre. Fitness class helps me to develop a better sense of body awareness. I am able to make the connections on where to align my body better. Taking fitness classes has been more effective that hearing someone tell me to straighten my back or feet. My feet may turn but they still carry meon many long walks. Life is too short to sit on the sidelines and watch others be active. The way that I am moving may make others feel uncomfortable, but doesn’t hurt anyone unless I bump into them. If I run into you I am truly sorry, it wasn’t intentional. I can’t control the reactions of other people. The negative comments from others are not helpful and make me feel more self-conscious.Despite what others may think of how I move, I am determined to keep going. I have places to go and won’t let my disability or the reactions from others stop me.  

Rainbows and Storms: A Book for Children With Congenital Heart Disease

Twenty years ago I was a high school cheerleader who dreamt of becoming a journalist. I was lucky enough to meet a local TV reporter one night while cheering during a Friday night football game and to this day I still remember the piece of advice he gave me — write what you know. Today I am a Los Angeles-based journalist, but more importantly, I am a mama to twin, 7-year-old boys who were born premature and a 3-year-old little girl who was born with the complex congenital heart disease, Tetralogy of Fallot (TOF). Writing has always been my creative outlet. It has allowed me to share other people’s triumphs and tragedies through my work as a journalist, and has also allowed me to release my innermost feelings — both happiness and heartache. After becoming a mama to medically complex babies my heart and mental health took a hit, so I took that TV reporter’s advice and turned to what I knew best as a way to cope — writing. I first wrote blogs about the experience I shared with my twin boys while they were in the neonatal intensive care unit as newborns. And when my daughter was born, I continued to write about her congenital heart disease diagnosis and the three open-heart surgeries she’s battled through since then. Writing has absolutely been therapeutic, and brave, resilient children continue to be my inspiration. Three years ago when my daughter was almost 1 year old, my family moved to a new home to be closer to her cardiologist. You can imagine my surprise and bittersweet excitement, when I met my next-door neighbor and found out that her little girl was also getting ready for her first open-heart surgery. Coincidence? Divine intervention? Fate? All of the above, if you ask me! While our meeting was definitely by chance, I know in my heart that the reason was intentional. Both of our daughters were born with a congenital heart disease (CHD) and we needed each other; our girls did too. Before we met, I often felt like I was the only parent I knew in real life who was trying to make important decisions for a medically fragile baby. Most of my friends had seemingly healthy pregnancies and children who were thriving, meanwhile, I was digging deep to stay hopeful as my daughter recovered from invasive, back-to-back open-heart surgeries. The fact of the matter is that CHDs are the most common birth defect; a lot of children have them and live long, happy lives. But when it’s your child, yours, who is born immediately fighting for their life, the fear and anxiety are at a different level and their experiences — and ours as parents — are life-changing. Watching our daughters interact has warmed our hearts, especially because the bond they have with CHD is so unique. We have taken comfort in knowing they will always have each other to relate to in a special way. Their friendship seemed to form almost instantaneously and in the midst of it all, we were deeply inspired to write a children’s book based on their friendships and their CHDs. So in March 2020 when COVID-19 forced the closure of everyday life, we found ourselves with dare I say a “tad more time” despite being working moms. Although we had already started writing and creating our children’s book a year or so before, the pandemic gave us more of a reason to share it with the world. In April 2021 we self-published “Rainbows & Storms,” as a tribute to our daughters, Nylah Amor and Layla Rae. Our illustrations were created to mimic how our precious daughters look in real life — beautiful brown skin and curly hair. The story includes symbolism that heart warriors (a common term used to describe children battling CHDs) can relate to including “zipper scars on their chest,” the heart shape and a mixture of rainbows and storms that are indicative of how many CHD journeys are. We wrote “Rainbows & Storms” to show how diverse CHDs are and that they affect children from all backgrounds. The message of the book is simple but powerful, and our hope is that it can help teach children how to be there for their friends throughout life’s triumphs and tragedies. We want to get “Rainbows & Storms” in as many little hands and hearts as possible, because we believe in the power of community, the importance of helping each other and the inspiration that resilient children can offer to our world. Sharing our daughters’ medical journeys has translated into us also becoming great friends who continue to be inspired by the CHD community. We know that we have a responsibility to give back hope to the other families of children like ours who are born striving to survive. Since becoming “heart mama” besties, Jennifer and I have teamed up on various CHD fundraisers that have benefitted individual children and families, and we have also held donation drives for cardiac patients and parents at Children’s Hospital Los Angeles. We are two heart mamas on a lifelong mission to lend our support to others in honor of our brave and beautiful little girls. As we slowly emerge from the pandemic, I still write a lot both professionally and personally and I know I will continue to find inspiration for my stories from my own children, and the others who are on rare medical journeys of their own. I’ve witnessed firsthand the countless storms of life, but I am grateful that now I am able to focus a little more on the rainbows that come in the form of unexpected, lifelong friendships. “Rainbows & Storms” is available on Amazon.com. During the month of September, 100% of book sales proceeds will benefit the nonprofit, Conquering CHD.

A COVID-19 Recovery Story From a Medical Mama

It’s been almost nine months since the coronavirus began spreading in our world, affecting everyone in varying degrees. The stress and fatigue of the pandemic has been hard to carry… and with no end in sight and cases surging (again) I felt like it was time to share what’s been on my heart. COVID-19 popped on my radar when it slowly started to dominate the television news cycle in March. I’ve spent much of 2020 covering virtual COVID-19 press conferences related to Los Angeles County as part of my job as a journalist. I have analyzed coronavirus case counts, hospitalizations and death rates, trying to make sense of it all for those who read my news reports. I have also shared a lot of COVID-19 news stories and all of the precautions (wear a mask, stay home, social distance) on my social media platforms which I followed at very high standards. On a personal level, I have spent every day cleaning and sanitizing, trying as best as I could to keep my family safe. I was one of those people who took the coronavirus as an immediate and direct threat since Day 1, and for good reason. I am a medical mama of twin boys, now 6, who were born premature, and a 2-year-old baby girl who was born with the congenital heart disease, Tetralogy of Fallot. I have stood on the side lines as she went through three life-saving open heart surgeries and battled her way through countless procedures. I made a decision early on during quarantine that I would be strict in order to protect my children as much as I could. My family didn’t go anywhere; even going out to grocery shop was off limits. I quarantined with my kids and my parents (who live a few days out of the week at my house to help with my kids so I can work), while my husband kept going back and forth to work. We stood home for five straight months, yet the coronavirus still managed to finagle its way into my life over the summer and a large part of me felt like all of my quarantine efforts were in vain. Testing Positive It was the first day of virtual first-grade in August for my boys and I woke up feeling like a horse kicked me in the back — worst body aches I’ve ever experienced. That day, I also remember randomly smelling sour milk, but didn’t think much about it. It wasn’t until the next day, when I got a phone call from my dad saying, “I hate to tell you this, but I got that sh*! …” that the panic set in. My heart and world shattered in one instant. I could hear in his voice how scared and sick he was. I hung up the phone, called my daughter’s cardiologist and our pediatrician to find out where we could get tested ASAP since we had been around my dad just a few days before. I still vividly remember standing with my husband at the rapid results clinic waiting… when the medical assistant handed me our paperwork and whispered, “I attached some county guidelines.” I just wanted to cry because I knew that meant there had to be at least one positive test. I felt my knees want to buckle underneath me, but I held it together until I walked back to the car and had to deliver the heartbreaking news to my mom. There was a heavy cloud of fear over me, I was shaking and staring blankly at the results and quickly looking at each one of our names and then words “NEGATIVE” and/or “POSITIVE.” Myself, my husband, my parents who are in their late 60s, and one of my little boys all tested positive. What do we do now? How was I supposed to isolate myself to stop the spread of the coronavirus, but also take care of my children? Trying to make a care plan was nearly impossible because the fear and anxiety were almost debilitating. My parents immediately went back to their own house and I had to make the heartbreaking decision to send my son who tested positive with them in order to try and keep my other two children from contracting it from him. My heart was torn. Not being able to take care of him was the worst feeling in the world. I didn’t see him for almost three weeks. A few days after we tested positive, my second son spiked a fever and so did my babygirl. My son was thankfully back to normal after about a day, but my daughter worried us. She had a fever of nearly 104 for three days; I remember her crying and moaning from the pain. All I could think was, “Oh my God did I get her sick? I will never forgive myself if something happens to her.” I had been wearing three face masks including an N95 to try and keep from spreading the virus to her and my son. And it didn’t work. Her cardiologist advised against retesting her and instead said, “Let’s operate like she has the coronavirus too.” I had no words, just tears. I was petrified. She was given antibiotics and steroids to prevent her from developing pneumonia or any other COVID-19 related complications. I am so grateful that after four days of showing symptoms, she recovered. In the midst of what was going on in my house, I also had to call my parents daily to check on them. They had great medical care and had their vitals taken every few days, so that was comforting to know they were being monitored. My son who tested positive was asymptomatic and was able to keep my parents hopeful and smiling while quarantining with them. My mom (who is normally my right hand) experienced extreme fatigue, a bad cough and many other symptoms that I know she kept to herself (because that’s what moms do). My dad, who is in incredible shape at 66, scared us the most. I have never in my life seen him so ill, so weak. He has always been very active, exercising multiple times a day and running upwards of six miles daily. COVID-19 took all of that stamina and youth away from him, and to this day he still has not yet fully recovered. He had a fever for 10 days, extreme fatigue, cough and more. My dad told me he would never fully discuss how the virus really made him feel, but I do know that he is completely terrified to get it again. I developed the most intense migraine I have ever had while sick with coronavirus. On day three of the migraine, I could no longer take the excruciating pounding in my head so I took some medication my body is used to because I have suffered for migraines for several years. As soon as I popped it in my mouth, I started to feel extreme burning in my head. I started crying hysterically and got into the shower to see if it would help, but the burning only got worse. My local urgent care was able to see me and gave me a migraine cocktail — four shots in my backside. It was so strong I couldn’t even walk out to my car (where my husband who was also dealing with pretty intense coronavirus symptoms, and my kids, were waiting), the doctor had to walk me out and help me get in. I slept for about 10 hours and woke up with major relief. To this day, I won’t take that medication again because I know that COVID-19 left an impression on my body basically telling me we are no longer friends. Looking for Grace Having the coronavirus felt like I was up against this deadly infection, so I trained myself to keep thinking about the high survival rate. I remember going to sleep every night just praying so hard that my family and I would all wake up the next day. The thing that caused the most anxiety was how widely the virus differs from one person to the next. I never really knew who was going to get better or if anyone was going to get worse. My family is still experiencing some of the “long hauler” symptoms of the virus, including an increase in headaches, migraines, body aches and fatigue. The most difficult for me has been the longstanding affect on my senses. It has now been more than three months since I have tasted any food or drinks, or smelled the scents of my beautiful children. And then there are the mental challenges; I still carry a lot of anxiety about the long-term effects the virus will have on my aging parents, my daughter’s fragile heart, my husband’s underlying condition and my growing little boys. Not to mention the guilt… because the virus also spread to others members of my family, and I can’t help but feel partly responsible for them getting sick too. I am indeed forever grateful that we are all so much better. I often think about how lucky we are that we didn’t suffer the fatal consequences of this virus, which has since claimed the lives of more than 240,000 Americans… including a handful of good people I knew personally. And I still go through so many thoughts in my head, wondering how and why this all happened to us. I know I did my damndest to keep my family safe, yet the regret of knowing that I failed still weighs heavy on my heart. So every day I try to find grace and remember that I really did everything I could. Since “recovering,” I have started donating my convalescent plasma to critically ill COVID-19 patients in the hopes that it will help them recover. Being able to donate is the only way I know how to make sure that my experience with COVID-19 wasn’t just a waste of time, tears and energy. So I want to urge you all to do your best to help stop the spread of the virus as we are again seeing this latest surge. Wear your mask. Social distance, avoid gathering with a lot of people, stay outside of other peoples’ houses, always wash your hands, get a COVID-19 test and be considerate of  others who may not be as healthy as you are. I know we are all tired of the pandemic, but trust me when I say we can’t afford to let our guard down. Stay safe, and take care of your families.

Why Quarantine Is Familiar to Me Since Raising Medically Fragile Kids

The COVID-19 pandemic has blanketed much of the world over the last couple of months with isolation, fear, uncertainty, sadness and anxiety; so much of that feels familiar to me, in dare I say an “almost comforting” way. I’m a mama to twin 6-year-old-boys (born at 27 weeks via emergency c-section) and a 2-year-old little girl who was born with a complex congenital heart disease. I’ve been in survival mode for the last six years… much of which has been spent in self-isolation while raising my children. Life — as I had always known it — came to a complete standstill (much like when the novel coronavirus made the world come to a screeching halt) as soon as my motherhood journey began. The abrupt change that hit my life came almost out of nowhere, and it wasn’t very kind. After my premature twin boys were born, my husband and I spent months in the hospital, only going home (separately I might add) to sleep and eat, then we’d head right back to the NICU to check our babies and their progress. My life revolved around the NICU as I kept vigil at my babies incubators, their progress and health was all that mattered to me. I became an expert on all things related to premature babies. I learned CPR, I became an expert hand washer, I wore personal protective equipment (face mask and gown or “PPE” as they call it nowadays in the news) and I became absolutely terrified of any and all germs that could make my babies even the tiniest bit sick. I’ve always kept a very clean home, but once I became a twin mama, and preemie mama at that, my cleanliness went into overdrive. Hand sanitizer pumps sat on my kitchen island and coffee tables at home. Clorox wipes and all things “antibacterial” were always on my kitchen sink, in my pantry and stockpiled in my closets. I had a stash of face masks that I snagged from the hospital in my cupboard, in my purse and in my car. In retrospect, I now realize that becoming a mother of premature twins was a crash course in preparation for my babygirl’s medical journey… and even for the COVID-19 pandemic. When my twins were 3, I found out I was expecting my daughter who was diagnosed in utero with Tetralogy of Fallot. One day I was over the moon discovering she was a girl (I was convinced she was going to be my third boy!), and just days later I found out about her heart-wrenching diagnosis (talk about highs and lows). Instead of enjoying my pregnancy and shopping for all things “babygirl,” we immediately started traveling to meet with doctors and surgeons from around California trying to make the best birth plan with the little information we had about a life-threatening disease we had never heard of before. Life, yet again, as I knew it came crashing down on me and the health of my new babygirl had to be my priority. Nothing else mattered besides keeping my children healthy and safe. Three open heart surgeries and several procedures later, my daughter is doing quite well. It’s been an eye-opening, heartbreaking yet joyful and educational experience all at the same time. I’ve learned so much, so much, about parenting, love and why health always has to take precedence COVID-19 or not… at least, in my household. Since she was born we’ve always kept her away from public places and most mass family gatherings. At the get-togethers she has made an appearance at, there’s always constant panic and anxiety on my end wondering if someone is sick. I rarely let anyone hug or kiss her outside of the family members who live in our household. And I tend to keep her (and my boys) relatively close to my hip, whether that be at home or when visiting a relative’s house. I watch them like a hawk. I hover. I make them social distance. I protect her, and my twin boys, at all costs. I assume anyone and everyone we encounter could possibly be sick, even if they aren’t showing symptoms. This is how I’ve always operated since becoming a mom, long before the coronavirus was even a threat. I know there’s been judgment from people who don’t understand my “overboard” precautionary tactics when it comes to my children. And I don’t expect them to get it. We took a lot of the same COVID-19-type precautions when our twins were born too. I isolated them at home away from anyone who wasn’t in our immediate family for much of their first year of life because I knew in my heart it was the best way to keep them from getting any sicker, and to give them the best opportunity to get strong. The knuckles on my hands have been cracked, dry, bloody and rough ever since I became a mom. To me, it’s just one of my many mommy battle wounds I am proud to wear. I do my damndest to keep my twins and my heart warrior daughter from catching anything: the common cold, flu, fever… now, coronavirus. Social-distancing and quarantine… they’ve always been our norm. I’ve gone months and months without seeing friends, without seeing family, without shopping, without going to the salon, without self-care, without going to social gatherings, without celebrating holidays, without hugs and instead I just stood home with my babies. It’s not all that bad, especially when you’re familiar with it. Motherhood taught me a hard lesson about life — if my children’s health is in jeopardy, nothing else should matter. Not things, not places, not restrictions, not sacrifices, nothing. I understand how COVID-19 has been an unwelcome visitor to so many people around the globe, but for me... thankfully it’s only been a reminder that the way I have always taken care of my children with the upmost precautions is what remains best for protecting their health. And if I’m being honest, it’s been kind of nice seeing other people step into our world and put health and hand-washing at the forefront, even if it only lasts during quarantine.

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What Doctors Should Say to Parents of a Child With a Heart Defect

My Precious Nylah, They said you weren’t growing at a typical rate in utero. “Possibly dwarfism,” they said. “It’s hard to tell just yet.” They said you’d be born with a complex congenital heart disease. “Tetralogy of Fallot,” they said. They said you’d likely need a life-saving heart surgery immediately after birth. “Between 1-5 days… depending,” t hey said. They said you’d likely need lifelong cardiac care, daily medications and an unforeseen amount of surgeries and procedures. “It’s hard to predict what it will all entail,” they said. They said you may have limitations. “You’ll have to wait to see how she grows,” they said. They said I had the choice to abort you because of your unhealthy heart. “Think about it,” they said. They said your heart would have to be stopped as the surgeon operated on your tiny body, time and time again. “She’ll be on the bypass machine; there are risks,” t hey said. They said your chest may remain open for a few days after surgery, and when I first saw you in the ICU you’d be monitored with wires and needles from head to toe. “Be prepared,” they said. They said you would need a pulmonary valve replacement at some point during childhood. “The time has come, we know she’s not even 2 yet and she has already had two other open-heart surgeries, but she needs this too,” they said. They said you’d be medically fragile and told us to be very cautious. “Watch her like a hawk,” they said. But through all of that, there is so much more they didn’t say. They didn’t say you’d have the most beautiful curls. They didn’t say you’d develop a tremendous bond with your daddy after he accompanied you on the life-flight helicopter the day after you were born. They didn’t say you’d have the rosiest, sweetest cheeks. They didn’t say you’d always be referred to as, “the happiest baby in the CTICU and CVACUTE.” They didn’t say you’d take your first steps four days after your third open heart surgery. They didn’t say you’d handle your monthly echocardiograms with little to no fuss, and instead mostly coos, smiles and giggles. They said it would take 10 weeks for you to heal from surgeries, but they didn’t say because you’re so determined I’d have to physically slow you down. They didn’t say that the bond your twin brothers have with each other would extend into a beautiful bond with you. They didn’t say I’d paint your tiny toes while you slept. They didn’t say you would become a source of inspiration to your family and friends. They didn’t say you’d love strawberries and smell like them often. They didn’t say you’d fight to conquer your congenital heart disease with impeccable grace. They didn’t say your sweet voice would be music to my ears. They didn’t say you would thrive, and they forgot to mention you would survive. I love you. Happy 2nd Birthday, my brave girl. ~Mama

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