If you've been reading my blog for a while, you know my
daughter has crossed eyes, also called strabismus. There are many forms of
strabismus, Emma has esotropia. That means her eyes point inwards. Her story is
somewhat special but not uncommon. So for anyone curious to know her story from
her diagnosis to her surgery, you are welcomed to read.
Emma was born with crossed eyes. Her first pediatrician failed
to diagnose her. A nurse mentioned that she wasn't sure it was normal for
Emma’s eyes to be so crossed. She explained that newborns do cross their eyes
when trying to focus but that it usually isn't so apparent and that it should
go away before 6 months (Emma was 5 months then). We were still not too worried
but we started to get concerned.
At her second appointment with her pediatrician, Emma was
still not diagnosed with crossed eyes. He told us everything looked fine
(except for her having an umbilical hernia- which is our last worry). Her eyes
were becoming more and more crossed. We wanted a second opinion but we trusted
our pediatrician, after all, he IS a doctor and he has been dealing with
children for a long time.
Emma developed a fever while we were in Montreal (big city
compared to where we live) and we brought her to see Noah’s old pediatrician.
He took a glance at Emma and said “never mind the fever, what’s with her eyes?
How long has she been crossed eyed for? What are you doing about it?” Uh,
excuse me? My daughter has what?? It was the first time that a professional
said it. Emma had crossed eyes. She has been crossed eyed since birth.
When the pediatrician heard that she was born this way he
got very concerned. He started making calls and asked me when I was going back
home. I said I was planning on leaving the next day. He replied “you’re not
leaving until we know what is going on with your daughter’s eyes. Montreal is
the place to be right now.” Now, as a parent, that scared the crap out of me. I
understood how serious it was… He got us an emergency appointment for the very
next day at the Children’s. Then came the blame… the doctor asked me “how did
this go unnoticed?” well uh… Our first pediatrician said it was fine… “And, you
didn't see anything wrong with her eyes?” well… yes but the doctor said it was
fine! He gave me an upset look and
simply said “look, I don’t want to blame anyone. I just want her to be okay and
right now, I don’t know if she’s okay.” We left the office and my heart was
crushed. I felt cheated, I felt like I failed to protect Emma… On top of that,
Stephen wasn't in town. I had to tell him all that by phone and he was pretty
upset.
The next day we went to the hospital at 11 am. We waited a
long time… when we finally saw the doctor she made Emma pass a bunch of tests
and asked me how old she was. By then Emma was almost 8 months. She shook her
head and said “it’s too bad that we didn't catch it earlier.” She then explained
to me that she would most likely need surgery for her crossed eyes but that the
real problem was that because we waited so long Emma developed a lazy eye. That means that her brain was starting to
erase her right eye (the lazy one) and only use her left one. She prescribed
glasses and told us to come back in 6 weeks.
We went glasses shopping that very same day and found a pair
that was just big enough for her little small chubby face. They took 2 weeks to
arrive.
We then had her second exam. Her vision had a slight change
but nearly enough. She started patching 12 hours a day for 7 days. Patching
meant that Emma had to wear a patch on her good eye to force her lazy eye to
see. We had to patch for 2 weeks and come back. At this point, the kids and I
started to just live in Montreal while Stephen traveled back and forth. Emma
was also put in the surgery waiting list at that point. She wasn't ready for
surgery but since the waiting list was about 1 year long, the doctor projected
that her eyes should be ready for surgery then.
After two weeks of intense patching, Emma was doing much
better. She could actually follow
objects from her right eye (which she refused to do before) and she was using
it a bit more. We reduced patching hours so that she didn't lose sight in her
left eye. She was down to 6 hours a day for 7 days. We also decided to get her
new glasses because she was starting to take off her cute red ones. We got her
a pair with elastics in the back and much bigger lenses (so she couldn't peak!)
Best decision we took glasses wise.
We also told the doctor that we really liked them and
everything but that we couldn't travel back and forth with the kids anymore. We
had to come down every 2-8 weeks and honestly it felt like Stephen and I were
never together anymore. Plus, the 5 hour travel to come down and the 5 hours to
go back up were terrible with an 8 month old and a 19 month old. So the doctor
at the Children’s referred us to a doctor we had in our little town. It was a
huge mistake…
After our first incident with a failed diagnosis we were
very much careful with what doctors told us. We weren't hesitant at all in asking
for a second opinion. The new doctor is probably very experienced with adults
and older children but he didn't know what he was doing with an infant. In the
first appointment he had with her he reduced the patching to 4 hours a day for
5 days. Which sounded decent but in his second appointment he simply told us
that she was ready for surgery and that patching was no longer necessary. That
rang a bell. When I called the Children’s hospital to ask for a second opinion,
the ophthalmologist begged me not to stop, that we’d be losing all the work
we've been doing in her eyes. So, we went back to being followed at the
Children’s.
At the end of February we got THE call. Emma had room to be
operated at the beginning of march. The appointment wasn't too long. They took
measurements and had her have a physical basic test. They gave us the
instructions for surgery and we were good to go.
When we arrived at the hospital (at about 8 am) we were
asked to change Emma and go back to the waiting room. Stephen had to change her
because I was a wreck. Then she got called to be weighted and measured. At
about 8h30 we were asked to go to the 10th floor for her surgery.
When we were at the 10th floor, we met with the nurses
and Emma’s doctor who explained to us the surgery and that they would operate
on both eyes to loosen two muscles (one per eye). She asked if we had any
questions (which we did not- I think) and then she left. The anesthetist also
came and spoke to us explaining to us how they’d administer anesthesia and the
side effects it could have… We signed (well Stephen signed, I couldn't do much
really- I was a wreck) and we waited for the nurses to come back. Around 9h10
the nurses came to get her from the waiting room. This was the hardest moment,
to let her go. We couldn't bring her into the operating room, so we had to give
our daughter to total strangers and trust that they’d take care of her and fix
her eyes. Daddy handed her over and we looked at each other… We were
speechless. We asked the secretary where we should wait and she said to go back
to the second floor, that there was a big waiting room and that they would
contact us through a phone to tell us that Emma was done with surgery and that
we could come back up.
Stephen and I sat in the waiting room… I asked Stephen to
get me a coffee… I hadn't eaten that morning. I started texting family and
friends and everyone was a great source of support. They had told us that the
operation was going to last 1 hour and a half from beginning to end. The first
hour went by fast. The phone rang to let another mom know her toddler was out
of surgery. Then, time went by very slowly… It had been an hour and a half…
Then minutes felt like hours… I think I went to the bathroom at least 5 times
just to make time go by faster. Almost two hours… No news… At the point where
Stephen was starting to freak out (because I started freaking out the second it
had been an hour and a half) the phone rang. The receptionist said “You must be
Emma’s mom.” My heart was racing, all I said was “ya” She told us to come up,
that Emma was out of surgery. We went up, the elevators couldn't go fast
enough. When we got there, we had to wait for a nurse to come get us in another
waiting room… more waiting. When we were finally allowed in, we got to see Emma
quickly but couldn't touch her or stay with her because she was sleeping and it’s
always better for patients to wake up on their own. After about 30 minutes,
Emma woke up. She was screaming and unhappy, I was holding her and the nurse
gave her another shot of morphine. She fell asleep in my arms again.
She stayed asleep for at least an hour and a half. Nurses
encouraged us to try and wake her up and get her to drink something. They also
said that if she was still in pain, they’d give her another dose of morphine
but that she’d have to stay another 45 minutes. So, I did what any nursing mom
knows how to do to wake her baby up, I pulled my breast out. It was an almost
instant reaction; she smelled, got to my nipple and started sucking. Awesome…
Halfway through her feeding she looked at us… She had so much trouble opening
her eyes. The doctors said it would feel like sand paper inside her eyes when
she’d wake up. Just thinking about how she felt made me want to cry. As soon as
she woke up and started playing the nurses told us to go ahead get her changed
that we could bring her home. The nurses also gave us some pink sun glasses
because her eyes would be sensitive to light. She rocked them!
We drove home, she fell asleep in the car again and then
Stephen had to leave. He had to go back to work the next day. I was honestly
terrified of letting him go. I didn't want to be alone if something went wrong
(like Emma getting an infection, not feeling well). I just wanted him there.
Distance was really hard that time around. Emma’s uncle gave us a huge teddy
bear (named Barry White) that Stephen brought up in the car with him.
Emma had a fast recovery (thank god). By the evening she was
playing like nothing had happened. You can tell by the play doh containers in
her feet and the necklaces she put around her neck. Her eyes didn't seem to
cause any discomfort. The week was uneventful and Emma didn't react at all to
the operation.
A week later we had to go back to the doctor to see how Emma
was doing. We were happy to find out that she can now see better without
glasses than with glasses. Also, to give her a chance to be binocular she will
not be using patches anymore. So, as of right now, Emma is not wearing any
glasses or patches!!!! It’s great news… She still has a big preference for her
left eye BUT she can now hold a fixation with her right eye (which she could
never do before). We can say that this surgery was successful and so far so
good… Emma has another appointment in three weeks and we’ll see how her case
evolves.
Emma’s surgery was a huge challenge we (as a family) had to
go through… It really wasn't easy and it put a lot of stress on everyone. We
are happy it is done… We cannot wait to see the end results and we are so
thankful for all the doctors, ophthalmologists, nurses and staff that took care
of our little Emma. We will never thank you enough.
.JPG)
