‘I see twins. IDENTICAL twins.’ I let all the air out of my lungs and quietly said, ‘WHAT?’: First-time mom navigates surprise pregnancy, medically complex child

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My Surprise Pregnancy

“In the fall of 2017, the late morning after 4th period, I was sitting in my art room grading artwork for my job as an art teacher. Earlier that morning I had some twinges of pelvic pain and thought, ‘Hurray! I am finally getting my period!’ (I was a month late, with an irregular schedule, but I was on birth control so I thought nothing of it.) But these twinges were severe. So severe that I was doubled over and I immediately thought, ‘Uh oh please not another ruptured cyst.’ I quickly dialed my OB-GYN and explained to them my symptoms; I was very lucky to get in for an ultrasound later that day. I called up my secretary and explained to her what was going on and she found coverage for me immediately.

Driving up the highway, the pain got more intense. As I was driving, I just kept thinking it was another cyst. Pregnancy did not even cross my mind because my partner and I were always safe, and quite honestly, I never even really wanted to have children of my own. My husband and I had discussed the option of having kids but we were both always like, ‘If it happens, it happens. If it doesn’t, it doesn’t.’ That was the mantra in our relationship. I was 36 at the time, my husband was 42. We were older, so it meant we’d be older parents. I just didn’t know if I really wanted to be an older mother.

Sitting in the chair during the ultrasound, I was just waiting for the tech to say, ‘Yep! There’s the cyst!’ BUT instead, I heard, ‘Congratulations, you are pregnant, around 6 weeks, but I’ll be right back I need to get the doctor.’ She abruptly left the room and 5 minutes later came back in with the doctor. The time from sitting in the chair and hearing the words ‘you are pregnant’ to the time when the doctor came in felt…like….an eternity. My heart was racing, I was sweating, I felt lightheaded, and I thought I was possibly having a panic attack. I snapped out of it and heard, ‘I see twins. IDENTICAL twins.’ I think I was holding my breath in because I immediately let all the air out and quietly said, ‘WHAT?’ The doctor asked me if twins were in my family and I just said, ‘Yes. My mother is an identical twin.’

I went home feeling like I had been hit by a bus. I was in sheer panic because I literally had no idea how to tell my husband the news. I was a) pregnant and b) HAVING TWINS…

It went a little like this. My husband comes home, and we are standing in the hallway. I vaguely remember saying that I had some interesting news. He says to me, ‘What news?’ I go, ‘I’M PREGNANT.’ Husband looks at me, hugs me, and says, ‘OK! We are having a kid!’ I then say, ‘BUT it’s identical twins.’ Husband says, ‘Oh sh*t. I think I can handle one child, BUT TWO? I just don’t know how we would do it.’

Courtesy of Danielle McCann

Pregnancy Journey

We went back for another ultrasound at 8 weeks pregnant, and we learned I had a disappearing twin. The one embryo had vanished. My husband to this day always jokes saying that Rian was the stronger of the twin and ate the other one. Her nickname as a baby was ‘fatty mcgoo’ because she was so chunky! I like that we can laugh about that, but yet, some part of me makes me sad and think ‘what if.’ Can’t live in the past, right? But it still does cross my mind every now and then, the ‘what if’ that twin had survived.

My pregnancy was pretty normal. I worked out, ate right, and took care of myself. I was a healthy person before I was pregnant, but I wanted to make sure I was doing everything right for my baby during pregnancy. I had all the necessary testing done to make sure she was OK. At the 12 or 14-week ultrasound, a little white marker showed up on Rian. I panicked, asked what I should do, and although my Panorama test came back fine, they recommended I get an amniocentesis done. But everything CAME BACK NORMAL. Rian was fine, growing normally, and I didn’t have any issues either.

At 36 weeks, she was breached but went back a week later and she was back into position. On Wednesday, July 25th, I took my mom out to lunch before driving her to her doctor’s appointment. We sat down in this little side street deli, had the most delicious lobster rolls, and chatted about how she was so thrilled that I was going to be a mother. That she was still in shock that I was pregnant. (My family never in a million years thought I would have a child, let alone get married.) Soon, I drove her to her appointment, and while waiting for her, I around walked the parking lot to pass the time.

At 12:11 a.m. Thursday morning, I woke up to a trickling down my leg. This was NOTHING like the movies. No gushing water, just a very light trickle. I sat up and said to my husband, ‘I think my water broke?’ Yes with a question mark because I was waiting for some big gush of water. We called the doctor’s office and waited until 2 a.m. to hop in the car and head to the hospital. I am 100% sure my husband was going 42 mph in a 55mph zone and I remember saying to him, ‘Do you want me to have a kid on the side of the road or in the hospital with the way you are driving right now!’

My labor experience was rough. Rian just was NOT budging; she was hanging out in the canal and just would not budge her little body out. The doctor gave me 2 choices, either use the suction/vacuum method or have a c -section. I really didn’t want a c-section, but he stressed that this was probably the best choice seeing how long I was in labor already and it was not guaranteed that Rian would come out via vacuum. So, c-section it was. I somehow developed a tolerance to the anesthesia, so I was put under for the birth of my child.

I MISSED the birth of my child. I missed it. I did NOT get to hold my daughter immediately after she was born. My husband was NOT allowed in the delivery room. It was nothing how I imagined it. I have no pictures of me holding my child after her birth. I didn’t wake up from the anesthesia until 2 hours after she was born. I just vaguely remember being in and out of sleep and seeing my husband holding Rian up to my breast to nurse her.

I feel like that experience right there was almost like a premonition of what the future held for our family.

Courtesy of Danielle McCann

The Beginnings of Medical Issues

October 2018. I am at work, and I get a missed call from my mother. During my lunch break, I call her back asking if everything is alright. She states that she thinks I need to come home because she called Rian’s pediatrician and they recommended we bring Rian in to be looked at. Rian had been having these odd tremor-like movements from a little after birth. We noticed them while changing her diapers but as new parents and parents with ZERO baby experience, we just thought nothing of it because we were told, ‘Babies always do weird things when they are little.’ Her local pediatrician took a look at her and referred us to a local neurologist.

She stated that, ‘Maybe, just to play it safe, we have Neuro take a peek and maybe they’ll do an EEG on Rian.’ I wasn’t sure how to respond at the time. We were just thankful to my parents for watching Rian and making the judgment call for us. We got right on with the Neuro here, and he got us set up for an EEG on a Thursday. Told us that it would take a week for the results to be looked at. He mentioned he would be away at a conference that weekend, but to please call if anything came up.

new born girl sleeping on mom's chest
Courtesy of Danielle McCann

On December 2nd of 2018, our world came crumbling down. I have experienced fear and panic in my life. My husband, who is active duty military, and was a Recon Marine and a Sniper had witnessed all acts of hell. BUT nothing prepared me OR my husband for what we saw when Rian had that first full-blown tonic-clonic seizure. I thought she was dying. I had never seen anyone or anything move like that before. We were driving back from seeing Santa. I was in the back seat and she just started jerking, jerking her arms and legs simultaneously in motion, gasping for air, and then repeating it for over 5 minutes. We sped to the nearest emergency room only to be told that we would be transferred down to the larger hospital so that they could better take care of our precious daughter.

We spent 4 long days in the hospital with Rian. We were opened up to the world of watching your child being poked and prodded like a science experiment. We saw her scream in sheer pain while the nurses dug into her veins, one after another, to get that stick so that she could get labs done. I watched my 4-month-old go under anesthesia for the first time, and wake up from anesthesia screaming and crying. Waiting on the results of her first of many MRIs. My heart was pounding so loud that day, waiting on those results. I remember sitting in the waiting room with my family, coming out of the bathroom, and everyone was gone. I was running down the hallways trying to find where everyone went, panicking, chasing the nurses who were wheeling her to the recovery room. I was yelling to the staff, ‘Where did they take Rian?! Where is she?!’

I sat in the chair in the hospital room and watched my husband try to sleep on the floor while we waited for the doctors to come up with a plan. The only plan was meds and an epileptic genetic panel done. And that was that.

little girl in a hospital bed
Courtesy of Danielle McCann

A Shocking Diagnosis

In late February of 2019, we got a phone call from her local neurologist asking if we had received the genetic testing results yet. This was my introduction to the frustrating world of insurance and approvals. Finally, in March, we got the diagnosis. Sitting in that exam room with Rian and my husband, and looking at the doctor’s eyes before he even said anything, I knew something was wrong. To hear a doctor say that they have never heard of a disorder like this, let alone any sort of diagnosis for your child, is gut-wrenching. So gut-wrenching that I felt like someone took a sledgehammer and just kept pummeling me to the ground. I looked at my husband and I could see him trying to hold tears back. We just sat there, stunned, not knowing what to say or do.

The neurologist said to us that it would be in our best interest to take Rian to Boston Children’s Hospital where they have a Center of Excellence for CDKL5 and that he’d be referring us out. That night, as we lay in bed, we both cried, sobbed, and held each other’s hand tightly. We kept saying, ‘How could this happen to such a little person? I kept questioning my pregnancy. ‘What did I do wrong? I did everything I was supposed to and then some, so how could this happen?’ ‘Am I being punished for the poor choices I made when I was younger?’ I/we were in constant denial and we just kept saying to each other that this isn’t fair.

We knew after researching the Center of Excellence that this is what Rian needed, that this was the best place possible for her. So from there, from April of 2019 to the present day, we make multiple trips a month to see her team of specialists at Boston Children’s Hospital.

Our Life Now

Navigating this life with Rian, this medically-complex diagnosis, has made me realize that doctors do not have the answers to everything. They are there to just give you their educated guess on what they think might be best for your child. You are your child’s best advocate. If you do not feel strongly about a decision that is being made for your child, speak up. There were and still to this day have been so many times that in those earlier years of her diagnosis I wish I had listened to my gut. I wish we had brought her to Boston sooner. I keep thinking that IF we had, maybe we wouldn’t be where we are today.

little girl in a swing
Courtesy of Danielle McCann

I NOW listen to my gut. Rian had a bad reaction to an anti-seizure medication and we kept telling her Neuro at the time that something was just not right. We had to keep pushing for an MRI, pushing and pushing until finally after about 4 months of back and forth and referrals and denials of insurance approvals, we got one. Rian developed brain lesions from the toxicity of this medication, and they have permanently damaged her brain. This has ultimately led to an abundance of brutal side effects that are impacting her quality of life. But here is so much more to my daughter than her diagnosis. There is so much more to our family than our daughter’s diagnosis.

Rian touches everyone that she meets. Her smile melts your heart and her laugh makes you smile. Our family is full of SO MUCH LOVE. Rian is full of so much love. She has gone through more than you and I have gone through in a lifetime. She is one of the most resilient, courageous little girls that perseveres through life. And although she may struggle and although we may struggle most times in this special needs world, we know that she is surrounded by LOVE. I know that her future has SO MUCH LOVE IN IT.”

little girl with her parents
Courtesy of Danielle McCann
Courtesy of Danielle McCann

This story was submitted to Love What Matters by Danielle McCann of Malta, NY. You can follow her journey on Instagram and Facebook. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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‘I got in the shower. ‘Dana, are you alright?’ My boyfriend heard a loud crash. He rolled me on my side, stuck his fingers in my mouth.’: Woman with epilepsy explains how she has ‘cheated death’ countless times

‘I was out at a restaurant. ‘I’m not feeling well,’ I said. I knew something was wrong. Shaking, I excused myself and drove straight home. When I got back, my world crumbled around me.’

‘The beds around me emptied and my eyes clouded with tears. I knew something was wrong. It felt like I was giving birth. I tried to muffle my cries.’

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