‘I was at work when I noticed a strange feeling and excused myself to the restroom. In shock, I found crimson red trickling down my legs.’: Mom births preemie rainbow baby with autism

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Disclaimer: This story contains details of miscarriage.

“I married my husband in June of 2016. We wanted to start our family right away, although he treats my first child from a previous relationship like his own. Soon after our courthouse wedding, we found out I was pregnant, and we were ecstatic. We were both working at the time. One morning, about five weeks into my pregnancy, I was at work when I noticed a strange feeling and excused myself to the restroom. I was in shock when I saw the crimson red trickling down my legs and immediately told my boss I had to go to the doctor. My husband brought me in, and as I already expected, there was no heartbeat and nothing on the ultrasound. We were devastated. I was grateful I had not told too many people about being pregnant except close family and friends. We did not tell my daughter, as we thought it would be too confusing for her at the age she was.

Bride and groom at altar during wedding
Courtesy of Julia Horvath
Bride and groom holding flowers near fountain
Courtesy of Julia Horvath

Time passed. I was healing from the loss as best as I could. I was going back to work and also starting my work at a local funeral home, which was what I was planning to be involved with career-wise. Around the beginning of November of 2016, I was feeling a little off and decided to take another pregnancy test. I could not believe my eyes when I saw a positive test result. I came out of the bathroom to show my husband, and he was elated. We immediately booked an appointment with the doctor.

One evening, about 8 weeks into my pregnancy, I went into the bathroom to find spotting. I went to stand up, and blood poured down my legs and all over the floor. I remember almost fainting; my husband called 911 and an ambulance rushed me to the emergency room. To our surprise, the baby was fine! Bouncing around on the screen of the ultrasound. The doctors were baffled. My husband and I thought we were losing a second pregnancy, but in fact, found out I had a condition called a subchorionic hemorrhage. I was told to take it easy, not to drive too often, and to go on bed rest. This was a shock because I was so adamant about finishing my classes for mortuary science.

My husband being the rock he is for us, told me not to worry about any of those things right now and to focus on being healthy for the baby. Throughout the next 19 weeks, I continued to hemorrhage and spot throughout the pregnancy. Every ultrasound showed the baby was fine and growing throughout all of this. We found out the baby was going to be a boy, and we were elated. Our daughter was so excited to finally have a sibling. We decided to name him Thorsten. Thor for short because he seemed to be strong, even throughout my condition.

Mother with arm around young daughter, smiling
Courtesy of Julia Horvath

My husband was working super hard at this time to make ends meet. He is a diesel technician for Penske. He worked long hours and a lot of overtime. We decided to move into a different apartment due to the cost of rent being so high in the one we were residing in. We moved at the beginning of April 2017. Certain obstacles happened during this move because we thought we were moving to be a little closer to my family in order to have some help with my high-risk pregnancy, which happened to make things a little more stressful on us.

On the afternoon of April 29, 2017, I remember waking up to another hemorrhage, but this one was different. Something was wrong, and I was feeling contractions. We rushed to the hospital and delivered our sweet 2lb, 5.2 oz baby at 27 weeks gestation. It was an emergency C-section. We were all in shock, I didn’t know how to feel or process any of what was going on. My husband and I spent three long months in the NICU watching our little baby suffer through heel sticks, blood transfusions, and other things premature babies go through. Being in the NICU was very isolating for us. We felt very alone until we started seeing some of the other NICU parents going through what we were. We also became friends with a few of our NICU nurses, whom we are still in contact with today. To respect their privacy, I won’t mention names.

Mother and father with preemie after giving birth
Courtesy of Julia Horvath

July 13, 2017, our son was able to come home. We were elated. Everyone was excited, especially Audrey, our daughter. My husband and I decided I should stay at home and not go back to work just yet due to how small our boy still was at only 6 pounds at three months old. He worked and would come home and even help me throughout the night with the baby, taking turns with feedings, medications, and diapers. At times, I still felt very lonely due to the fact I didn’t know many people who have had a premature baby as early as mine. It felt like my whole day revolved around parenting, cooking meals, and cleaning while staring blankly out my window wishing I could experience the outdoors. But because Thor’s immune system wasn’t built up yet, I stayed in.

Months went by, and Thor was not meeting his milestones the way he should. We decided to go to a developmental pediatrician. She evaluated him and said to come back when he turned two years old. During this time, milestones came late or not at all, finally sitting up on his own only after turning a year old. And barely crawling or walking. I noticed my son would not look at me or really focus on peekaboo. I was starting to wonder if he was possibly on the spectrum. Something told me to call the doctor again and tell her what I thought was happening. Finally, his second birthday arrived, and it was time to go back to the developmental pediatrician. My husband and I already felt it in our guts before the doctor announced his diagnosis: Autism Spectrum Disorder.

Mother holding autistic son with daughter
Courtesy of Julia Horvath
Sister pushes autistic brother on swing
Courtesy of Julia Horvath

We immediately went into hyper-vigilant mode as parents, setting up meetings with early intervention and therapists. Thor started to make a little progress physically, but not yet cognitively. This is when we decided we wanted a change and moved from New Jersey to Pennsylvania and started the EI program here. Slowly, Thor started to mimic some words and gesture towards what he wanted. My husband and I practiced day in and day out the tactics and therapies we learned through early intervention and the therapists. Our daughter is super involved as well with her brother, always reading to him and showing him how to do new things.

Girl plays with autistic brother on swing
Courtesy of Julia Horvath
Girl hugs autistic brother on lap near pumpkins
Courtesy of Julia Horvath

My husband Steve is my hero, working hard day in and day out as well as making it to IEP meetings, the first day of school, and teaching Thor new things each day. Thorsten still has a bit to go to be where he should be developmentally and socially, but I know he is our hero. Our family has watched him grow from a tiny 2-pound baby into a happy, curious, silly four-year-old. He shows us love in his own way, even if he doesn’t always like to be hugged. I myself am talking to a psychologist because I do show some qualities of being on the spectrum as a ‘high functioning’ individual.

Father holds autistic son with daughter
Courtesy of Julia Horvath

Soon after Thor’s evaluation, I met someone through a mutual friend. Her son is on the spectrum as well. She has been my best friend ever since. Heather is a kind, compassionate woman who will sit on the phone with me for hours if I need to vent, cry, or just plain out feel as though someone is there for me. This has been extra special due to the state of the world with a global pandemic happening over the past year. Quarantine has been especially hard for a lot of us; I feel especially parents of special needs children. My friend Heather has coached me through IEP meetings, behavioral issues, and many other issues that have come up for the past two years being a special needs mom. I remember saying to myself, ‘How lucky am I to have found someone who knows this path?’ Thank you, Heather. I feel complete knowing I have one solid friendship in this journey.

Our family has been through a lot, and my husband has been the rock and glue holding it together. We will soon be celebrating our fifth wedding anniversary. I couldn’t have chosen a better partner. My husband Steve is a wonderful father, stepfather, son to his parents, brother, and brother-in-law. If it wasn’t for him I wouldn’t be able to type this right now. Time heals, and my children are flourishing. With much hurt comes many rewards. ‘Always say I love you and never go to bed angry’ is one of the quotes I try to live by as hard as it may be to stay grounded when stressed out.

Mother and father with autistic son between them
Courtesy of Julia Horvath

As for myself, I am in therapy because I always say it’s best to talk to someone about the things you are going through. After talking to my therapist, I always breathe a sigh of relief. Without therapy, I wouldn’t have the tools I need to heal myself so I can be the best me there is for my family. My job is to teach my children love and compassion, to not let any disability hinder them from making strides or progress. I want to be the best support system for them.

I also want to add how hard it is and isolating it feels to navigate making new friends or something as simple as going to a grocery store with your child who is on the spectrum. Many of our children do not like loud sounds, bright lights, or sensory overloaded situations. It’s hard to be able to go to the playground when you feel as though all eyes are staring at you when your child has a meltdown because they are frustrated and cannot communicate. We’ve been able to manage these situations better by using a weighted vest or headphones and sunglasses for our son.

Autistic boy in car seat wearing sunglasses
Courtesy of Julia Horvath
Family with autistic son seated on stairs
Courtesy of Julia Horvath

I want people to know if you’re in the NICU sitting next to your baby who you can’t quite hold yet, there is always hope. Your baby is strong. I want to tell the couple who feel alone with an autism diagnosis, you are not alone, and you can and will be the best advocate for your child. There is something special about parents who are chosen to raise babies and children in these situations. We have had our ups and downs as a couple—everyone does—but hope and love will get you through it. Always try to be there for your spouse, even in the darkest of times. I remember one of my favorite NICU nurses saying, ‘You’ll get there, and you’ll look back at this and think, wow, I made it.’

And boy, did we make it. I will never forget the sounds of the NICU, the beeping of the monitors, the stress of not being able to bring your baby home right away. One thing for sure is I remember all the love those nurses poured over our son and our family. They are the glue. Thank you, Marty, Nancy, and Mary as well as countless other nurses who helped us through our journey. I remember feeling so blessed and loved as they cheered us on as we walked out the door to finally go home with our baby. Thank you to Ms. Kelly who has been an advocate for our son during this journey with Autism. Thank you for also being a good friend to me. Thank you, Miss Amber, for always giving me good advice when it comes to speech therapy. Thanks to my in-laws and my mother for showing support and always asking questions on what will help Thor flourish. Most of all, thank you to my husband Steve, my ROCK. I love you.”

Family with autistic son and supportive friends
Courtesy of Julia Horvath
Mother with autistic son and daughter, smiling
Courtesy of Julia Horvath

This story was submitted to Love What Matters by Julia Horvath. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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