Holding our baby at one month old

This is a story of heartbreak.  But also one of hope.  My journey to motherhood was fraught with challenge from the start, but actually giving birth and accepting the reality of our daughter was much, much harder.  It has taken me over a year to piece this story together.  Much of it is still raw, painful and on-going.  It is still very difficult to share this information without breaking down.

Disclaimer: there is some sensitive material in this story, some of which I have shielded from friends who became pregnant after me.  If you are currently pregnant and reading this, I just want to warn you that this post might cause some anxiety and fear.

From a relatively young age, I knew that pregnancy might not be possible for me.  Despite the odds I was given in my early 20s, my husband and I kept trying and eventually managed to conceive on our third round of IVF.  I was 36 at the time, and if you’re interested, you can read more about my journey to pregnancy HERE https://sandragin.ca/2018/06/30/trying-to-conceive-how-we-managed-to-conceive/  We were overjoyed with the news of our miracle pregnancy and couldn’t have been happier that we were finally going to become parents.

The Phone Call That Changed Everything

All of that changed when I received the worst phone call of my life.  I had just entered the third trimester of my pregnancy.  It was late September, and I had spent a lazy morning at home because I had the morning off from work.  Although my pregnancy had been great for the first 22 weeks, we had received terrifying news that our baby was measuring small.  As a result, we had gone through a series of tests including an amniocentesis.  However, shortly after all the tests, our doctors told us that they were optimistic that things were fine and that we just had a small baby.

But when I answered that phone call on that late September morning, our lives changed dramatically and permanently.  It was our doctor, and she asked me if I was sitting down.  I immediately knew that the news was not good. 

In a few words, she told me that she had received the micro-array testing from our amnio, which can take a couple weeks to come back, and that they had discovered an extremely rare chromosomal abnormality in our baby.  Apparently, it was so rare that she had never even heard of it.  And then she said that she was so, so sorry.

I sat in silence because I didn’t know how to reply.  I didn’t understand any of what she had said.  I fumbled around for some response and remember asking, “Are you 100% sure this is the case?”  She told me that the amnio is a diagnostic test that gives completely accurate results.  Yes, my unborn baby had a genetic disorder called Cat Eye Syndrome.  But what did that mean?  What was wrong with my baby?

She told me that I needed to come in tomorrow to discuss our options, and that she would book me an appointment to meet with a genetic counsellor.  I took down the information in a fog and then immediately got on the computer.  I spent the next hour trying to find any information about Cat Eye Syndrome before realizing that almost nothing useful existed.  What information was there was panic-inducing and completely inconclusive.  I was overwhelmed and lost when I finally called my husband to break the news.

He took it harder than I anticipated and began trying to learn as much as he could on the internet.  We discovered that Cat Eye Syndrome is a spectrum disorder that could present in any number of abnormalities or malformations in pretty much any part of the body, and that it affected 1 in 150,000 to 200,000 people.  So our baby could be born with major deformities and/or an intellectual disability.  Or, she could be born absolutely normal.  The information was confusing and completely unhelpful.

An Impossible Choice

When we met with our doctor the next day, she brought us into her office and immediately handed me the box of tissues.  But I wasn’t ready to cry because I had no idea what was going on.  I couldn’t fathom that there was anything wrong with my baby, and I certainly wanted more information before I started to feel anything definitive.  Unfortunately, she had almost nothing to tell us.  Since so little is known about the disorder and much can only be determined after a baby is born, there wasn’t much to discuss.

Except for termination.  This hadn’t even crossed my mind.  But our doctor did want us to know that we had exactly one day to decide if we wanted to terminate our pregnancy; otherwise, it would be illegal to do so in Canada.  If we waited more than a day then we could fly elsewhere to do so if we decided to terminate at a later date. 

I couldn’t believe that my happy, miracle pregnancy had suddenly become a nightmare.  I had 24 hours to make a decision based on a tiny amount of information about a syndrome that nobody had ever heard of, and had no idea what kind of problems my baby might have—or not.

It was that tiny speck of hope that I clung to.  I knew there was a possibility that this baby might defy the odds.  That maybe, just maybe, our baby might be the outlier.  We were already able to rule out a few things: according to our ultrasounds (and we were having 2-3 a week), our baby had all the normal baby parts, two hands and feet with the right number of digits.  The paediatric cardiologist had done two very thorough ultrasounds and concluded that Baby’s heart looked good.  There was some concern about one of her kidneys, but the other one looked great, and the doctors seemed happy about that.

But there was so much that we couldn’t know.  Like brain development.  Eyes, ears, bowels.  All of these parts were commonly affected in this syndrome.  And so all we could do was wait, hope, and love our unborn baby despite our fears.

The last three months of my pregnancy were terribly depressing.  I cried more than I had in my life.  I don’t know how to properly describe this time.  It was bleak.  Gut-wrenching.   All of the joy that comes from being an expectant mother was taken away; we were robbed of the “typical” pregnancy journey, and we clung together awaiting our baby’s fearful arrival.  We put off having a baby shower, building a nursery, purchasing baby clothes.  These commonplace tasks were just too painful.  We had no way of knowing if our baby would be coming home from the hospital after her birth, or if we would spend our first year(s) in the NICU … or worse.

A Failed Induction and a Nightmarish Birth Story

And then, our induction date arrived in early December and we went to the hospital in as good spirits as we could muster.  I kept holding on to my intuition; it told me that my baby was fine and that everything was going to be okay.  Even though our baby was small, she had continued to grow along her curve; we had been told to expect an early delivery based on her size, but I got to carry her to 38 weeks.  Even though they told us that my placenta was low-lying and I would need a C-section, a couple weeks before her schedule date we learned that the placenta was perfect and that I could be induced for a natural birth.  We had been told so much that had turned out to be false.  Surely, our baby would be the same.

Unfortunately, I am still dealing from the trauma of my 11-day stay in the hospital.  It was terrible and terrifying for so many reasons, and I won’t go into the details.  The short story is this: my induction failed.  After 6 days of painfully trying to force my body into labour, my doctors finally recommended a C section. 

The moments leading up to Everly’s birth were the scariest moments of my life.  Robin was not allowed to be in the operating room while they prepped me for the C-section.  The room was cold, bright, and sterile.  There were at least a dozen doctors and nurses in the room and the atmosphere was tense.  I was shaking.  Everyone was waiting to see what this baby would be like and if she would need to be rushed to the OR.  I was told that I wouldn’t be able to hold her right away since she would need a thorough examination.

Robin came in and held my hand.  We both held our breaths for the most tense and looming moment of our lives.  It only took a few minutes.  I couldn’t feel anything but heard the doctor tell Robin to come look over the curtain.  He announced that she was a girl.  And then she was swooped up and taken to the examining table nearby.

I could hear her crying, which was a good sign.  I frantically begged Robin to let me know if she was okay – did she look okay?!  Was she breathing on her own??  What was happening??  But before we knew it, our baby was back beside us and laid upon on my chest for the first time.  I could see for myself that she had all the normal baby parts, and I held her against me for a single breath before yelling, “I’m going to puke!  Take her!” and promptly threw up all over the ground (according to my nurse, this was a completely normal response to the drugs).

Our baby was eventually taken to the NICU for monitoring and I was wheeled to the recovery room.  It took me over an hour before I regained feeling back in my body.  I couldn’t wait to get back to my husband and baby, and I was in a cloud of adrenaline and shock.  I was beginning to believe that my intuition had been right all along.  Our baby must be fine!

We had one full day of “normal” new parent bliss.  Despite being separated from my family that night (I was kept in the Women’s ward and Everly and Robin stayed in the NICU, 15 minutes away), we got to experience those precious first hours of happiness with our “miracle baby.”  I jumped the gun and wrongly assumed that our challenges would end here.  Surely after all of our struggles, all of our years of longing for a child, after all these months of sorrow and fear…surely, those days were behind us?

I was very wrong, and the worst days were yet to come.

The Diagnosis

The next morning, we were told that Everly was blind.  She was missing a large section of retina in both eyes—the part that allows for vision.  She could register light and shadow (she would squint when the light came on), but the paediatric ophthalmologist told us that the best we could hope for was about 20/200 vision; in other words, our daughter would be severely visually impaired and would likely be blind.

The following day, she failed her hearing test.  Twice. 

There isn’t much for me to write here because it was too painful.  I watched my husband diminish into misery greater than anything I could imagine, and I tried to stay strong for us all.  While trying to grapple with this devastating news, I was also trying to recover from my C-section, trying to breastfeed, trying to pump, and trying to bond with my baby.  But I was broken inside, and it manifested in the skyrocketing of my blood pressure. 

My doctors soon realized that my blood pressure was dangerously high, and so I was sent back to the Women’s ward to receive treatment.  They feared that I had complications with pre-eclampsia, which can be fatal, and almost didn’t discharge me in time for Christmas.  By this time, we had been moved 9 separate times during our 11 days in the hospital, and our last room was dark, depressing, and in a part of the hospital that felt completely forgotten.  We huddled together in our tears and tried not to look at our baby with sadness.  But the truth was, we were devastated, heartbroken, and completely at a loss to how we would cope. 

We were discharged on December 22, 2018, with the knowledge that we were taking home our baby who was somehow healthy…but also deaf and blind. 

While we were relieved to be home and finally able to sleep in a comfortable bed together, so much of our homecoming was stilted and painful.  I know that all new mothers say that motherhood can’t be fathomed until you go through it yourself, but this was different.  My pregnancy had been different, and now my entire life would be different. The kind of different that can crush the spirit.

Coping with a New Definition of Motherhood

But this is also a story of hope.  And resilience.  Because we didn’t give up, and we didn’t allow our pain to define us.  We cried and we broke down.  And we still do.  But we also loved each other and our daughter more fiercely and passionately than I thought possible.  And we had help.

Although I hadn’t been close with my parents and siblings for years, this situation brought us together and healed much of the hurt that existed between us.  My in-laws and close friends were quick to provide us with food and help.  We had visits from the local nurse, and my doctors checked up on me.  We ate, we slept, we fed Everly, and the days—in a blur—went on.  

The first three months were more difficult than is possible to describe.  I know the adjustment period is tough for all new parents.  It took us time to figure out what kind of baby Everly was—when she was hungry, how to soothe her, all the typical baby things.  Some days, I was able to treat this in a way that felt “normal.”  She needed love, milk, and sleep, and that wasn’t any different than any other baby.  But there were many days of heart-wrenching despair.  Like any time I realized that Everly couldn’t hear my voice or see my face.  Or any time I took her out for a walk and agonized over the thought of running into a stranger—or worse, a friend.  How would I be able to speak without crying?  These thoughts were paralyzing. 

Hope Stirs

We received our first glimpse of hope when Everly turned three months old.  She was finally old enough to take a comprehensive hearing test.  We took her to the community audiology department for the procedure, which took four hours.  We sat in silence watching our sleeping baby, hooked up with a dozen wires, in a dark room as the audiologist painstakingly tested each frequency and volume.  Finally, she delivered us the news that Everly was definitely hard of hearing: moderate hearing loss on one side and moderate/severe on the other.  The good news was that with hearing aids, she would most likely be able to hear speech sounds and could probably learn to listen and speak.

Three weeks weeks later, Everly received her first pair of hearing aids.  We didn’t film her reaction when she heard sound for the first time (we were too nervous), but her eyes opened super wide and she started to look around.  We were told that this was a great reaction to the hearing aids, and we allowed ourselves to feel joy that our daughter could finally begin to hear our voices—and all the amazing sounds in our world. 

From here, we began to work with interventionists who would help our daughter since she had two disabilities or “dual sensory impairment” or “deafblindness.”  There was a lot to learn, and many appointments with specialists of all sorts.  And even with the good news about her hearing, I was still at a loss about Everly’s blindness.  I worried about every milestone and if she would achieve them, and wondered how we would ever teach her to crawl, or to someday walk, if she couldn’t see.  There were many things that triggered me in the early days.  Some of them were simple like seeing a group of moms walking with their strollers in the park, carefree and happy.  Some of them were more visceral, like watching a dad teach his daughter how to swim or ride a bike.  I’d head home in tears and cry for the rest of the day, holed up with my baby alone, wondering and fearing what kind of life we would have.

But at four months old, things started to change.  I noticed that Everly was watching her mobile above her crib, and I wondered if she could actually see it.  Then, on a whim, I decided to play her a “baby animation” music video on YouTube—a silly high contrast video for babies.  She watched it intently for six minutes straight while I held my breath in disbelief.

At 6 months old, we took her for her first ophthalmology appointment.  We saw two doctors who gave us completely different information.  Her ophthalmologist looked in her eyes and gave us the same, bleak news that we had received at Everly’s birth.  Yes, she’s blind.  She won’t be able to see more than light and shadows.  She won’t ever be able to learn how to read. 

But her functional vision doctor gave us hope.  He noticed that she was tracking objects and toys, and told us that she would probably still be legally blind, but that her vision would continue to improve over the next year.  We had no idea what to do with this information.  We had been bitterly disappointed in the past and we feared getting ahead of ourselves.  But we were also seeing what this doctor was seeing…and that was that Everly was seeing.

Foreverly After

This story does not have a happy ending because we don’t know how things are going to end.  With impairments in vision and hearing, we won’t know the full story of what Everly sees and hears until she’s old enough to tell us what she really sees and hears.  And while that’s a long time off in the future, the good news is that she should be able to tell us.  With her own voice and in her own words. 

Amazingly, Everly is hitting all of her milestones on track or just slightly behind.  Her specialists and interventionists haven’t given us any cause for alarm; in fact, they are continually impressed by her progress and never fail to tell us so.  Everly was almost 9 months old when she started crawling.  To me, this was the most hopeful day of her first year of life because it proved to me that she could see.  And when she started crawling to me from across the room, my heart nearly burst with the knowledge that she could locate me by sound and vision.

According to her eye doctors, Everly’s eyes will probably always be crossed—they think this is how she manages to see with the small piece of retina that she has in each eye.  It can be tough to meet people for the first time who see her with her hearing aids and her oddly crossed eyes.  Little kids will bluntly ask, “What’s wrong with her?”  And while I will probably always feel some heartache when this happens, I will also feel like it’s a real miracle that Everly can see or hear at all.

At almost 17 months old, Everly has been on 25 flights and all over the world.  She loves swimming and playing at the beach. She started walking without any assistance at 15 months.  It’s no longer out of the realm of possibility to imagine her one day skiing, scuba diving, or doing something as basic as riding a bike. 

I think it will always be difficult to look back on this time.  Little by little, we are settling into this life as parents with a child who has disabilities.  But she is also teaching us lessons in resilience and perseverance, reminding us just how capable she really is.  All through her young life, I will worry: is she developing at a normal rate?  Is she smart?  Is she going to make friends?  Will people accept her?  Love her?

But these are the questions that all moms ask of all their babies, and while Everly will always be different, these questions are as typical as they come.  I’m pretty sure we’re going to manage them the same way we’ve managed all of this: with love, determination, and an endless capacity for hope.

She will foreverly be my miracle.