“It’s been 3 years since our journey began. A whole 3 years of joy, happiness, stress, disbelief, sadness and uncertainly. In September 2015, my husband, Frank, and I discovered we were pregnant with identical twin girls. We’ve never had twins in the family prior to this so it was a shock but also a blessing. Growing up, I always envied those who had sisters. Knowing my daughters would have each other as a best friend brought joy and excitement to us. I had all these dreams and plans for them and thought about all of the fun things we could do together as a family.
Fast forward to my 12-week ultrasound. I expected to go in and have a routine ultrasound and be in and out in no time. This one seemed to take longer than before but I never thought anything of it. Once the test was done, they told me they would forward the results to my family doctor so I didn’t suspect anything was wrong. The next day, I receive a call from my doctor asking me to come into her office as soon as possible as she needs to speak with me in person. My heart sank. I knew it was likely not good news. I was so anxious to get in and see her right away. I wouldn’t be able to sleep until I knew what was the matter. A few days later, I met with my doctor. I could see in her face it was not good. ‘There is something wrong with Twin B,’ she said. ‘It looks as if she has a tumor on her belly, something wrong with her spine and left leg.’ She advised me that she would be putting a referral into Mount Sinai Hospital in Toronto to have an ultrasound and be seen by their High-Risk Pregnancy Clinic.
And so our story beings. The next week was filled with ultrasound after ultrasound after tests and more tests. I can’t even tell you how many doctors or technicians I had seen that week. I lost count. Turns out twin B did not have a tumor in her belly, but in fact she had an abdominal wall defect called an Omphalocele. Part of her intestines and liver were growing outside her tummy in a sack which would need to be surgically repaired after birth. This was definitely a hard pill to swallow since that wasn’t her only medical issue. We also had to deal with a spine and leg issues. She would also have to be separated from her twin sister after birth and would go directly to SickKids Hospital in Toronto which is across the street from the hospital her sister would be staying. I tried to push that thought aside and prayed both girls would be healthy and live. I cannot tell you how many times we were asked if we wanted to do selective reduction, meaning to abort Twin B to give Twin A a better chance at survival. Each time the question was brought up, my husband and I firmly said no. How could I choose which twin should live and which should die? I was not God and I would give both my girls a fighting chance to live and prove all the doctors wrong.
A few weeks later, I had a fetal echocardiogram scheduled for Twin B, which was explained to me as being a routine checkup for high risk pregnancies. The test seemed to go well and once we were done, we were ushered into a room for the cardiologist to tell us the results. I honestly didn’t anything would be wrong – how could there be? She already had many other health issues to deal with so in my mind, it was impossible there would be more. The doctor introduces himself and begins to tell us our daughter has many complex heart conditions. She will also need open heart surgery when she is big enough, and old enough. The timeline estimate given to us was sometimes between 6-8 months of age. Honestly, I don’t remember much from this conversation. I was too busy thinking up scenarios in my head. As he was explaining what was wrong with her heart, I kept telling myself she would be ok and that she’s got this. She’ll have her heart surgery and we can put this behind us.
As my pregnancy progressed, Twin B was not growing as fast as Twin A. That became a serious concern for our medical team. In fact, we were told she was only 1 lb the week before she came. My pregnancy was a mix of emotions. I was happy and excited to be expecting twin girls, but I was also terrified of what would become of them. On March 9, 2016, at only 30 weeks gestation, I had an emergency c-section and welcomed our girls into this world. Milayna (Twin A) was born weighing 3lbs 6oz and Naya (Twin B) weighed a whopping 2lbs 4oz. Naya was rushed over to the NICU at SickKids Hospital a couple of hours after birth as promised while Milayna went straight to the NICU at Mount Sinai.
The next few days were a blur for me. I was on heavy pain medication after my c-section and was being thrown all kinds of information about both girls. I really don’t remember much. Four days after birth, Naya was ready to go into surgery and have her Omphalocele repaired. My husband and I were terrified but remained hopeful she would survive this. Sure enough, a few hours later, her surgeon came out and told us everything went well. My teeny tiny fighter had survived her first of many surgeries.
Over the next couple of months, Milayna would be discharged home and Naya would continue to grow and recover in the NICU. She had a really hard time gaining weight. She had developed really bad reflux and would vomit quite regularly. The large wound on her abdomen was also expending a lot of calories and energy trying to heal so it was like playing a cat and mouse game for months. Finally, after 3.5 months in the NICU, Naya was well enough to be transferred to the General Surgery Floor where she would continue to heal until she was big enough for cardiac surgery. This wait turned into another 4.5 months. We tried to make the best of our time while waiting as it did us no good to sit there and feel sorry for ourselves.
Finally, at 8 months of age, Naya was scheduled to have her open-heart surgery. I met with the surgeon a day prior to go over the surgical process and risks. Of course, hearing the risks were cardiac arrest, stroke, blood loss and death to name a few, I was scared but also knew my daughter was a fighter. I told myself that doctors have to tell everyone having surgery the risks but it rarely ever happened.
November 10, 2016, Naya went into open heart surgery. She was so full of energy and excitement that morning and didn’t even care she was being wheeled away by surgical staff into an operating room. I walked away bawling my eyes out, replaying the conversation I had with the surgeon in my head about all the risks that could happen. We spent the day waiting and waiting and waiting in the surgical waiting room. We waited so long in fact, that the monitor in the room listing all surgical patient’s status’ turned off and the volunteers had gone home for the evening. Not one family was left waiting but us it seemed.
Sure enough, over 11 hours later, my daughter’s surgeon turned the corner to let us know the surgery was difficult, but it had gone well. She would be whisked off to the Critical Care Cardiac Unit shortly and we were to call the unit in an hour or so to go see her. What a relief it was to hear those words. It was as if a weight was lifted off me. Once we opened the door to her room, she was right in front of us surrounded by a team of nurses, doctors and respiratory therapists. The cardiac fellow introduced herself and proceeded to tell us that Naya wasn’t doing very well, and they were very worried for her. At this moment, I felt my heart sink. How could this happen to my little happy fighter? There’s no way that after 8 months of fighting, that God would end her life now. She looked so little and helpless lying in that bed covered in lines and tubes. Her chest was left open after surgery because her heart was very swollen and needed time to heal before closing her back up. Her body looked grey at this point because she didn’t have much blood profusion. She was also having a large amount of blood loss through her drains. I felt my world collapse in front of me. I didn’t know what to think or feel. I just wanted my baby to stay alive.
After a few hours, Naya’s nurse suggested we go and get some sleep as it would be a long next few days. We needed take care of ourselves in order to take care of her. We agreed and left to get some much needed rest. A few hours later, I get woken up by a call from SickKids Hospital. Seeing that name on my caller ID made my heart leap out of my throat. I thought I was going to be sick. I answered the phone. ‘Naya is continuing to decline. We will need to open her chest further to give her swollen heart room to pump,’ she said. I told her that was fine and we would be there shortly. I wake up my husband to tell him the news and we both get dressed while half asleep and made our way to the hospital as quickly as possible.
Once we made it to the hospital, we started walking down the long corridor that leads into the CCCU. Before we could make it past the doors, our daughter’s heart surgeon and staff physician were walking towards us. They stopped us in the hall to tell us that they had some bad news. Naya had gone into cardiac arrest shortly after our call and was now on ECMO (life support). They also informed us the electricity in Naya’s heart still hasn’t come back and if it didn’t return within two weeks, she would require a permanent pacemaker. Shocked is an understatement as to how we felt. I felt all control leave my hands and the only thing I could think to do was pray. As I stood over Naya laying in her bed those next few days, I prayed and I prayed and I prayed again.
Five days later, Naya was well enough to come off ECMO. After 3 attempts at closing her chest over a one-week period, her chest was finally closed. Not but a couple days later, her chest was reopened, and she began to decline yet again. We were told that Naya needed to go into surgery again. There we were, 2 weeks after Naya’s first open-heart surgery, she was being wheeled into her second heart surgery. I had almost felt like we had lost all hope. I was trying to wrap my head around the possibility that she may not make it out of that surgery alive. How does a twin, leave the other twin behind? How do we live on without her? These thoughts kept running through my head over and over as I sat and prayed to anyone and everyone in the universe that would listen. About 5 hours later, Naya’s surgeon came out and told us the repair was a success, but she had a lot of healing to do. ‘The next few days will be crucial.’ Over the next while, Naya struggled with fluid retention. She would never be able to pee enough of what she was taking in. It was always a battle with weighing her diapers and finding the right combination of medications to help with the fluid retention.
A few days after Naya’s 2nd open heart surgery, we received another call in the middle of the night from the hospital. ‘We think Naya has had a stroke. She isn’t moving the right side of her body.’
They wanted to get her into a CT scan to clarify what was happening. We immediately rushed to the hospital thinking they were wrong and that Naya was just sedated. Once we arrived I rushed into her room and began trying to move her right arm and leg. And sure enough, they were stiff. The CT scan did confirm she had a left ischemic stroke which will affect the right side of her body. They aren’t sure what she will or will not be able to do until she’s a bit older and more stable. They immediately started physiotherapy to help retrain her brain. The hope was that the brain will reroute the signals from the dead part of the brain to the healthy part of the brain as the brain was still forming, so this is very possible in young children. We met a wonderful physiotherapist there that worked very diligently with Naya and had such compassion for her and all the other kiddos he saw.
Soon after the stroke diagnosis, we found out Naya had a seizure likely due to the stroke. We also were informed the electricity in her heart had not returned after surgery and that she would be getting a permanent pacemaker placed in the next few days. Prior to this experience, I seriously though only the elderly had pacemakers. I had never heard of another child having a pacemaker before. It was hard not to feel defeated and think, ‘what’s next?!’ But we pushed forward and continued to be strong for Naya and support her through her recovery. That’s what she deserved from us for fighting so hard to stay alive. She was our real-life superhero in more than one way. She had overcome the obstacles thrown at her time after time and has continued to prove everyone wrong. Nothing was going to stop her.
Over the next 6 months, Naya remained in the CCCU as her fluid retention wouldn’t seem to go away no matter what the doctors tried. They sent her into the Cath lab to check the pressures in her heart to ensure her heart was in fact working properly. They immediately thought she was in heart failure again. The cath lab results showed the pressures in her heart were good, however now she had suffered a kidney injury from the dye used in the cath lab. It seemed as though Naya was checking off every risk on the list the doctor gave us prior to heart surgery. The doctors couldn’t figure her out. They joked that Naya needed her own medical book because everything they had learned in school and in their careers thus far, didn’t seem to help Naya. I honestly thought we’d never bring her home. The CCCU staff became our shoulder to cry on and a listening ear. They were there for us through the worst moments of our lives and picked us up when we needed it.
Finally on May 18, 2017, at over 14 months of age, Naya was discharged from the hospital and would be going home for the very first time in her life. She experienced sitting in a car seat, riding in a car and sleeping in her crib for the very first time.
A few weeks after being home, Naya was accepted into a children’s rehabilitation hospital called Holland Bloorview to help her recover from her stroke and learn to do all the normal things a child her age should be doing. She was bedridden her entire life up until this point. She wasn’t able to sit up on her own, roll over, crawl, talk, or even eat orally. We spent 2 months as inpatients at rehab from Monday to Friday and were able to go home on the weekends. She made great progress while we were there. She was able to gain strength to play with toys and sit up with support. Once we were home, her rehab continued. To this day, she continues to have physiotherapy, occupational therapy, speech and language therapy and more.
Naya will be 3 years old in a few weeks and she is now able to sit on her own for short periods of time, roll over and is trying to crawl. She also has a list of words that she can say like ‘momma’ and ‘bye.’ Her fluid retention is finally gone and she is off all her heart medication. She will need a heart repair in her future as she grows out of the pig valve that was placed in her heart. She also will need a pacemaker replacement before the 10-year mark.
Naya is considered medically fragile as she is still building up her immune system and something as simple as your everyday cold will send her to the hospital. She needs increased respiratory support. We are very careful where we take her during cold and flu season as we don’t want to risk her life. Everything aside, she is a happy, funny and outgoing little girl. Although our lives have been turned upside down and inside out, I couldn’t be more grateful or proud to be the mother of such strong and kind little girls.
This journey has been anything be easy, but I wouldn’t change a thing. It has taught me perspective. It has taught me what empathy really is and it has introduced us to the most amazing people we have ever known. We have gained a whole new family that care for us and are there for us during difficult and scary times. ‘God only gives you what you can handle,’ they say. Well, God must think that I’m one badass mother!”
This story was submitted to Love What Matters by Stephanie Soares. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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