Hi there and welcome!

You may know us from our Instagram page @storyofonesoybean where we share the life of our baby boy who has been diagnosed with Infantile Spasms, Lissencephaly and all the other stuff that came along. But we have been determined since day one to make sure that Soybean never misses out, and his world of therapy is one with color, creativity and fun! We have learned to see each day as another opportunity!

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All kinds of therapy, physical, occupational, vision, feeding, you name it - we are most likely doing it, is very much a part of our everyday now. So we try make the most of it, meet new friends from all over the world, and exchange experience of what has really made the difference. But most importantly, make sure that Soybean has fun along the way, has the most amount of snuggles and shares infinite love with everyone alongside of our journey.

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But first we had to learn the diagnosis. Soybean received his official Lissencephally diagnosis in March, 2019, and if you are up to reading, below you will find how our journey has began.

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Part I

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Being not too familiar with the whole OB process in Canada and how the observing doctor is associated with a specific hospital, in 3rd trimester I realized I need to switch OBs. Travelling in labor to another end of the city was just way too far for us, especially if we were to hit the rush hour. After a few dozen of calls, I have finally found one doctor who was ready to admit me so late along (3rd trimester). Coincidentally, he was also specializing in difficult cases. For this reason in his office he had an ultrasound machine, and during our first appointment after taking the history and checking my belly, he also checked out Soybean. …and looked a little alarmed. He saw slightly enlarged brain ventricles, and requested a repeat anatomy scan. Assuring me that it must be all fine, and it’s probably just his professional eye just looking for issues. 
In a week, we had a very, very detailed anatomy scan, that lasted 2.5 hours. In that time I went from super worrying, to falling asleep and back to worry that my hands were sweating. We got results almost immediately. Soybean had enlarged brain ventricles, right was 10.5 mm and left was 11 mm, which is considered a mild abnormality. OB has offered further testing. We decided that abortion on 3rd trimester wasn’t an option for us, thus any intrusive tests were too out of the question, as they increased chances of a premature birth and decreased Soybeans chances for any “normal”. Instead we proceeded with genetic tests (use parents blood work), heart ultrasound (genetic diseases affect multiple organs), and bi-weekly ultrasound check ups to monitor ventricles. Blood-work talks in probabilities for potential of any diseases, but results have shown that we have a very-very low probability for something to go wrong with the baby. Heart anatomy was perfect. Check ups all the way to delivery showed a decrease in ventricle size, that actually became almost normal in size. Giving us a condition of Isolated mild fetal ventriculomegaly. Thus without any additional symptoms everything was pointing to be okay.

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Part II

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It was a beginning of the 3rd maternity leave day for me. As always I couldn’t really sleep at night anymore due to the discomfort and constant urge to pee. I was just about to get up and make a bathroom run once more when I realized I am actually peeing… already… in bed! I have heard of uncontrollable bladder stories, but no way it would happen to me! or so I thought. I just “ran” to the bathroom. Embarrassed, I grabbed a towel on a way back to try to cover everything up, so my husband sleeping next to me wouldn’t notice. As soon as I got back into the bed, the incident happened again… sitting on a toilet without ability to control this flow, I decided to Google “water breaking vs peeing”. That was 6 am. To cut through all the organizational details we got admitted to the hospital around 11 am with mild contractions. After a check up of vitals, baby and dilation, it was around 1 cm, we were sent home with Tylenol and instructions to get some sleep and come back at 6pm.
I don’t remember getting home, but I passed out right away, just to wake up to ever increasing contraction. Around 3 pm my husband scooped me up and brought back to the hospital. My dilation was 5 cm. Everything was progressing pretty quickly so we were in delivery room right away. At this point I have asked for epidural (Initially I thought that I am a strong woman and can do this on my own! …but I didn’t know pain. ) With an epidural done the relief was only temporary, as my body started to uncontrollably shake, and the baby monitor beeping. In a minute the whole team was there putting patches on my belly to slow down contractions, monitoring Soybean closely. Then a doc tried to explain to me that something because of something the baby turned around and she will reach in now and try to grab him by the head and turn Soybean back around. …it was scary, it was painful, even with the epidural which dose at this point they have decreased, but it was done.

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Part III

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Like any vaginally delivered baby we took Soybean home in 24 hr. He slept right away in his crib, we established breastfeeding, and our daily routine. We were a happy babe and mom.
Since our family doctor declined to take on Soybean due to his in-utero history, we found a knowledgeable pediatrician, who right away sent us to do a head ultrasound to check up on those ventricles. Looking back at this now, I think the #1 mistake is that she sent us to the community hospital where nor technician, nor doctors specialize in newborns. First scan didn’t trigger any bells, we were told that Soybean outgrew his enlarged ventricles condition and his brain looks great!
We did notice that Soybean had a preference to one side when turning the head, which started to cause flat head on one side, or tortocolis. Pediatrician didn’t seem to be concerned by it. Yet I took Soybean to a chiropractor to fix this problem that at 1.5 months became pretty significant. Disclaimer: Chiropractic care generally is considered dangerous in infants. Once I mentioned this to our Pediatrician, her response was “oh, if you are okay to pay I will send you to physio instead”. Well, it’s not that I am okay to pay for overpriced physio. But if my son needs it, please let me know and I will make this decision; thank you very much! So at 3 months old Soybean started doing physio.
I also didn’t know really what to do with him at home, thus we signed up for baby and me classes offered by Toronto Public Library. That was a fun, educational and interactive environment that supported Soybean’s social skills.
To sum up, by 3 months old Soybean was doing Chiro, Physio and interactive play. He also up to this point was developing perfectly fine. Analyzing the past I think all the services we attended have greatly supported Soybeans development. If not for this would he developed differently? Would we learn about his condition sooner? I have a lot of questions, and unfortunately no answers. But I am glad he had such an amazing start.

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Part IV

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So how did we get our diagnosis?
Our pediatrician wasn’t taking Soybean’s condition too seriously. She kept asking to wait until he is 4 month, then another 2. Meanwhile I was taking him to recommended chiropractors, massage practitioners, Physio and swimming pool. Even drove to Midland to see Dr. Liz a retired pediatric chiropractor who now teaches around the world. With one fix she was able to resolve Soybean’s tortocolis and a constant crack in shoulders. Yet, everyone told me the same thing, that he simply has high muscle tone, which causes his minor delay, and I shouldn’t be too worried because it is not a delaaay. After every appointment I would breath out, and happily head home until an uneasy feeling would settle in again. Then at around 4 months Soybean started doing weird “episodes” that are even impossible to describe. I finally have requested to see a neurologist, at which appointment I was told once more, high muscle tone come back at 9 months. “Episodes” dismissed as a form of protest from Soybean. …but they started to get more frequent, so I requested another neurologist for a second opinion. We finally saw him in November… his approach swiped me from my feet. Almost right at the door, just from my son’s history he gave him two diagnosis, cerebral palsy and microcephaly. Boom.
I mean, I was looking for answers, but this is definitely not what I wanted to hear. So I started looking for a neurologist in Russia for a consultation. I simply didn’t want to believe those scary words. For $50 I found a neurologist who found an approach to me. She said don’t fight the diagnosis, you will receive MRI on top of free therapies. Use this to your advantage, meanwhile we will try to figure out what’s going on. And she highly recommended to request an EEG.
Right before Christmas, I came back to 2nd neurologist asking for EEG and paperwork for MRI. As MRI was only scheduled for July, and I couldn’t wait another half a year to find out what’s wrong. I was planning to take Soybean to States, to just pay for the damn procedure and finally have the answer. (There is no private company in Canada that does MRI for infants).

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Part V

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Time always works against us. This time though, time was giving us one last moment to enjoy Holiday season.

By Christmas time I had all the referrals at hand, but wasn’t able to schedule any appointments due to Holiday season. So we decided to get away to the Cottage with friends, and to celebrate Holidays. But upon return from the cottage a recommendation from a friend’s friend - a neonatal nurse, who happened to join in the cottage party, has changed everything. She was urging us to take Soybean to ER to the Hospital for Sick Children (Sickkids, Toronto) to speed up the process of medical investigation. And so we did. We showed up on first Sunday of the new year at 11 am at ER, stating that due to some episodes our son stopped breathing and turned blue. It was a total lie, this hasn’t happened. Well except the weird episodes that everyone was dismissing… but we needed to attract attention and urgency. So 8 hours later a neurology resident has issued us a referral for MRI with a priority, that was a week later dismissed by our own neurology doctor! Coincidentally, at the same time Yaroslav, our Soybean, has had an alarming episode that lasted for 30 min! The length of it has allowed us to capture the episode on video, and without hesitation we “flew” to Sickkids. This time around, with the video as a proof, our wait was only few hours and we exited the hospital with the referral to EEG scheduled in 2 days.

In 2 days we got our first diagnosis.

We have prepared for EEG as per instructions, the process went smoothly, without any incidents. The flashing lights at the end have triggered the episodes I was referring to, and “happy” that we are all successfully done we were headed home. When all of a sudden the receptionist has stopped us, and asked to go straight into the cabinet. ‘The doctor will be with you shortly’, she said. We could sense that this was no good news. In the office, after the resident took our information, Dr. Miller, a head of neurology at the Hospital for Sick Children has introduced himself. He started telling us that our son’s EEG has showed patterns of Hypsarrythmia – a pattern associated with Infantile Spasms (IS). That the behavioral pattern, and skills regression that we have reported were all signs of IS. That this is so very serious and needs to be treated ASAP. While in my head I was having a party, this is NOTCerebral Palsy. But I was mistaken to have that party soo early, as we were yet to find out what was causing IS, and all the side effects of the anti-epileptic drugs.

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Part VI

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With the diagnosis of Infantile Spasms our son had finally received a priority referral for MRI. It has been schedules for February, 2019. It was still a month away and while we were anxiously awaiting this appointment, we were also starting to see full side-effects of Vigabatrin, the anti-epileptic drug. It was taking away my baby... well first the Spasms took away that sparkle in his eye, and then the drugs took the rest. His responsiveness to the world, emotions, even interest to light up toys all were gone. Instead appeared lowered muscle tone, in the first few weeks Soybean couldn't even hold his head. Then came severe constipation, grumpiness and sleepiness. Lots and lots of sleep. A follow-up EEG showed only a 30% of decrease in Hypsarithmea (a brain pattern associated with Infantile Spasms). Thus, just 2 weeks later another drug was added - Prednisolone, a steroid treatment that somehow helps with the Spasms but significantly lowers immune system. To the point when even just a cold could be fatal. So we gave away our fur babies, 2 cats, and were stuck home for 3 months.

Finally, the day we have been fighting for all along came, we checked-in for MRI. Soybean was taken to the tiny room that looks too much like an operation room in movies, where they put IV in, put on the oxygen mask and holding a hysterical and fighting infant anesthesiologist administers the sleeping drug. A very frighting moment that seems to last hours, made me cry. Yet in just a few minutes everything was over, - your baby is out and nurse assures you that everything will be ok, and wheels the baby away asking you to wait in the corridor for an hour.

But an hour later, a technician came out, asked us to sign some more forms and disappeared behind the closed door for about another hour. In silence we waited for our Soybean. Fast forward to two-weeks later during another follow-up EEG with neurology, after discussing Infantile Spasms and the treatment doctor almost like mentions, ‘oh by the way we got your MRI results. Please sit down. Baby daddy please put Yaro down, and sit down.’ The whole team gathers. Your heart starts to race. You sense something is not right. 'Well, the results show that Infantile Spasms are caused by Lissencephally, a brain malformation. With such brain condition we see them quit often, and expect other types of seizure to develop.....' blanc. What. What is she talking about. I see her lips move but I honestly can't hear her. I see my husband getting up and starting to argue with her. They all politely try to calm him down. Another nurse continues to feed my baby. 'We recommend you not to Google this condition', Dr. Go says, 'Genetics team and Brain malformation clinic will schedule appointments with you to take this further'. We were left with this information. The team has left, and we stayed sited for a while trying to process the news. The end to our search for an answer.