A Parent’s Worst Nightmare

The following recount of the birth and short life of little Devraj Toor was submitted to JSC for publication by his mother Mandeep Toor, a Bolton resident:

Our journey started on June 5th 2020. When I saw those two pink lines on the pregnancy test, I couldn’t help but cry tears of happiness. Our family was growing, once again. We were going to have two kids under two. This pregnancy unlike my first, was textbook until things took a turn. I was exhausted more than ever but I blamed that on our little guy waking up every hour or so at night. As the weeks progressed, my anxiety was finally under control. I was too far along to worry about anything going wrong at this point. Or so I thought.

We finally had our 20 week anatomy scan. My husband Inder couldn’t be there due to Covid-19 but the ultrasound technician was nice enough to print us some pictures of our little growing miracle. Baby was fine, all my scans looked normal. Before we knew it, we were already into the third trimester awaiting the arrival of our second baby.

I remember vividly going into my 36+6 week appointment and letting my doctor know that I was exhausted to the point where it was hard to move. I was reminded I was already a busy mom of a 17 month old, working from home, trying to manage life during a pandemic. She put my mind at ease and let me know that what I was feeling was normal.

I went home that day feeling like I had been hit by a ton of bricks. My husband blamed it on me not sleeping enough and always doing something other than resting. He took our little one aside so I could get some rest. I managed to dose off for a little bit but suddenly woke up not being able to remember when I last felt the baby move. I got up as quickly as I possibly could and headed down to the kitchen.

I remember opening up the fridge and just staring at my options. I finally grabbed an iced tea and chugged it as if I hadn’t had anything to drink in ages. As my drink finished, I couldn’t shake off the feeling of something not being “right”. I laid on my side to start a kick count, but there were barely any countable movements. I walked over to the kitchen and grabbed a glass of ice cold water which always did the trick. I waited about a minute and nothing. I knew something was wrong.

I quickly grabbed my phone and called Labor and Delivery at Brampton Civic Hospital. The nurse that picked up my call suggested it was best for me to come in and get checked out. Worst case scenario, everything was fine, baby was just having a lazy day and I would be on my way back home.

My husband and 17 month old sent me off to the hospital at 10pm. I went alone due to Covid-19 protocols not allowing anyone into the hospital other than the patient. Once I made it to Labor and Delivery, the same nurse that I spoke to on the phone handed me a cold glass of water, and rested her hand on my belly. She waited patiently to feel the baby kick. Again, there was nothing. She asked me the chug the rest of the water and lay on my left side. Still nothing.

Panic started to kick in. I just knew something wasn’t right. I asked her if the cord could have been wrapped around the baby’s neck. She assured me that wasn’t the case. I remember her rushing over to the phone to speak to the OBGYN on call. “It’s an emergency, heart rate is slowly starting to drop, with minimal fetal movement” she said.

The OBGYN on call walked in within a few minutes and then introduced herself. You could sense the urgency in the tone of her voice. She asked me to call my husband right away, I was going to have this baby via emergency C-section as soon as possible. I remember looking up at the clock and seeing it was nearly 12am. I was so thrilled that our baby’s birthday would be so unique. January 21, 2021 (01.21.2021).

Before I knew it, I was in the operating room, and speed dialing my husband to see how far away he was. I was terrified to say the very least. I remember starting to throw up as the anesthesiologist started the process to administrator the subarachnoid block into my back.

Inder walked through the doors as the C-section began. He sat beside me and held my hand. In just a couple of minutes we were finally going to meet our baby!

With the C-section started my OBGYN kept saying she was very thankful I had come in when I did, because our baby was in a lot of distress. At 1:38AM on Thursday January 21, 2021 our second baby boy, Devraj Singh Toor, was born. All I could hear was the chatter amongst the doctor’s, I didn’t hear that first cry I had been waiting to hear the last 9 months.

It felt like an eternity passed and finally, like music to our ears, Dev finally cried exactly 2 minutes after he was born. The nurse held him up for me to see and quickly took him away. Inder walked over and took a few pictures of our little guy and came back telling me that he’s absolutely beautiful, and looks just like our older son Sarvin.  The OBGYN advised us that they were taking Dev to the NICU for further monitoring and they will keep us posted with updates. It never once occurred to me that he could be really “sick”.

At 4:30AM the same morning an NICU pediatrician informed us hey had concerns with Dev’s wellbeing. They had contacted SickKids in Toronto to transfer him there. I began to cry and ask what was wrong. She told me that it could be something as simple as his lungs being underdeveloped since he was born before 40 weeks.

Even at this point, not in a million years would I have ever thought that this would just be the start to a nightmare. She offered to let me go see Dev before he was transferred. As Inder wheeled me into the NICU, I didn’t know what to expect. The nurse directed us to the most beautiful little baby boy I ever laid my eyes on. He had a full head of hair, huge eyes and the softest skin. But, seeing him hooked up to so many machines, not knowing what anything was, I began to cry.

Inder accompanied Dev to SickKids and kept me updated sending photos and videos of him talking to our little Dev, telling him how strong he is and how loved he is by his entire family, especially his older brother Sarvin who was waiting to see him. As 24 hours went by with no answers major panic started to set in. The doctors kept running test after test but couldn’t figure out why Dev was in so much stress. His blood pressure was sky rocketing, it was hard to find his pulse, his respiratory issues were unaccounted for. A CT scan was ordered. This is when the pieces started to fall into place.

​On day 6 of Devraj’s birth – January 27th 2021, our world was shattered to its core. We were advised by our healthcare team at SickKids that they wanted to sit down and talk to us about Dev’s diagnosis.

As soon as the room’s door closed, I just knew something was terribly wrong. As the doctors and nurses were introducing themselves I remember becoming more and more anxious, wanting them to tell me what they knew. The Neontologist looked up at us and began with saying “I am really sorry to be the one that has to tell you this, but…” and in that moment, I felt a lump in my throat and tears began to flow. My worst nightmare had just begun.

I remember ripping off my mask because it was so hard to breath and listen to what she was saying at the same time. It felt as though the entire room was slowly starting to blur and nothing was making any sense. I felt Inder’s hand grasp mine tighter than I could ever imagine. The next words that came out of her mouth shook me to my core. “Unfortunately, the condition your son Dev is diagnosed with is incompatible with life”.

Dev was diagnosed with Generalized Arterial Calcification of Infancy (GACI). An ultra-rare recessive disease. The prognosis was lethal. The majority of infants with this condition do not survive past 6 months. It causes an abnormal amount of buildup of calcium within the walls of the arteries making it harder for blood to flow to organs ultimately leading to a stroke, heart attack and unfortunately death. This condition is so rare that since it first surfaced in 1899 there have only been slightly over 200 cases reported in medical history/literature.

Our dreams and aspirations were broken. We were devastated to hear that our baby might not make it. We fought hard in hopes that things would change. We had hopes that Dev would beat the odds and become the poster child that would make it through.

As the days went on, we made good use of our time, arranging to stay in downtown Toronto so that we could all be with Dev day and night, making memories to last a lifetime.

On February 21st 2021, the day Dev turned 1 month old, our older son Sarvin was finally able to meet his baby brother for the first time.  His face lit up like a Christmas tree. He finally knew where his mom and dad were spending their time while he was staying with his grandma.

By late February, Dev’s blood pressure was finally under control. The doctors were pleased with how well he was doing.

The first week of March 2021, we were advised that we could start making a plan to transition Dev to come home. It was a group effort to say the very least. We had to coordinate when his nurses would come home to administer his medications, we had to figure out how to get the drugs that he was on because they were not covered by OHIP and our private insurance refused to cover them.

On March 9th 2021 Dev was discharged from SickKids. We were on cloud nine and couldn’t be happier. We adjusted to being a family of 4 at home, finally. For a time we forgot about how sick Dev really was. We never imagined that our happiness would be so short lived.

On March 13th Dev wasn’t feeding like he normally did.  Just to be on the safe side we called 911. The paramedics checked his vitals and blood pressure and couldn’t find anything wrong with him. However, Inder and I were both uneasy and wanted Dev to be seen at SickKids. On the way there Inder kept texting me letting me know that Dev’s blood pressure was good, and his heart rate was where it should be. Then I remember texting Inder for another update and he didn’t respond. I frantically called him but no answer.

Inder finally called me nearly half an hour after my last message to him, choking on his words. He told me his sister was on the way over to our house to watch Sarvin, and that he had called my sister to bring me to SickKids. Some days his words re-play in my head over and over again. “Mandeep, Dev’s heart stopped on the way to the hospital. For two minutes. The paramedics performed CPR and were able to get his heart going again. You need to come as soon as possible.”

These are words no mother should ever have to hear. These are words that no father should ever have to say.

While I was on my way there his heart stopped again. For 8 minutes this time. I recall making it to the hospital and seeing Dev hooked up to more machines than I had ever seen. He wasn’t sedated enough, and he was opening his eyes to look around; I knew he wanted to be in our arms so badly. But we couldn’t hold him. It broke our hearts seeing him this way. We came so far, we went home, we finally were adjusting to being a family of 4. The next two days in the hospital we were walking on eggshells. Dev was in critical condition, and anything could happen at any time. We stayed by his bedside and hoped and prayed he would fight through this, like he always did. On March 14th, the team of cardiologists said that Dev was finally in stable condition and things were starting to look good – for this reason one of us had to leave his room due to Covid-19 regulations. We were so happy to hear this news.

On March the 15th, Inder called me in the morning like he normally does. Before I could even say anything, he said I needed to come to the hospital right away. Dev’s blood pressure was lower than usual. When I walked into Dev’s room I saw various doctors around him administering different medications. They pulled Inder and I aside to let us know that Dev’s heart was giving out – like we were told it eventually would. There was nothing that could be done at this point. Our little baby boy was going through heart failure. The team of doctors that were taking care of Dev then let us know that all the machines he was hooked up to were not prolonging his life in any way – and if we wanted, we could hold him in our arms. I held Dev in my arms close to my heart as he took his last breath. On Monday March 15th 2021, at exactly 11:55am our baby boy Dev took his last breath before he left this world to be at peace.

Our baby boy fought so hard with every ounce in his little body, but this horrible disease didn’t spare him. Our lives have been turned upside down. There isn’t a day that goes by where we don’t think of him or wonder how he would have been today. Our once perfect family is broken. Forever.

We miss you each and every day Dev. We love you more than you’ll ever know. Until our paths cross again baby boy, Mama, Dada and big Brother Sarvin love you forever.

We held you in our arms for a moment, but we will hold you in our hearts forever.  In Loving Memory of Devraj S Toor.  January 21, 2021 – March 15, 2021

To continue Dev’s legacy, the family have started a GoFundMe page to give back to SickKids Toronto.