‘The machines are no longer prolonging his life. If you want, you can hold him in your arms.’ I held him close to my heart, as he took his last breath.’: Mom honors son lost to rare GACI disease

More Stories like:

“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. We were nervous to say the very least, but so excited to see what the future held for our growing family. 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.

When we finally had our 20-week anatomy scan, my partner Inder couldn’t be there due to Covid-19. Luckily, the ultrasound technician was nice enough to print us some pictures of our little growing miracle. My OBGYN assured me everything was fine. The baby was fine, all my scans looked normal. There was absolutely no room for concern or doubt. Before we knew it, we were already into the third trimester awaiting the arrival of our second baby.

Courtesy of Mandeep Toor

I remember vividly going into 36+6 week appointment and letting my doctor know that I was so exhausted to the point where it was hard to move. Rest assured, she said the baby was growing, I’m 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 got hit by a ton of bricks. It took me longer than ever to leave the doctor’s office and make my way into the car to head home. I couldn’t move for the life in me. 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 doze 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 something wasn’t feeling ‘right.’

I knew something was off. I lay 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, the 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 10 p.m. I went alone due to Covid-19 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. Usually, by now my baby would have kicked me in my ribs at least 10 times, if not more.

Since that wasn’t happening, 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, but she assured me that wasn’t the case. ‘The baby’s heart rate would be dropping if that was 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 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 12 a.m. I was so thrilled that our baby’s birthday would be so unique. January 21, 2021 (01.21.2021).

I remember everything being fast-tracked at this point. I felt scared and alone. I remember my anxiety setting in – wondering if my baby was okay. Before I knew it, I was in the operating room, speed dialing my husband over and over again to see how far he was. I was terrified to say the very least. I remember starting to throw up as the anesthesiologist started the process of administrating the subarachnoid block into my back. A nurse held me close although I was throwing up and said every minute of this would be worth it once this baby is born.

Inder walked through the doors as the c section began. He sat beside me and held my hand. He kept reassuring me everything was going to be okay, and how strong I was. He reminded me that I had been through this before (C-section) and that every minute of this pain would be worth it.  In just a couple of minutes, we were finally going to meet our baby!

The c-section started, and my OBGYN kept saying she was very thankful I had come in when I did because our baby was in a lot of distress. I felt the doctors pulling me apart, I felt a lot of pressure, and then finally I felt them pull out our baby. At 1:38 a.m. on Thursday, January 21, 2021, our second baby boy Devraj Singh Toor was born. All I could hear was the chatter amongst the doctors. I didn’t hear that first cry I had been waiting for for the last 9 months. It felt like an eternity had passed by. Then finally…it was like music to our ears. Devraj finally cried exactly 2 minutes after he was born.

baby boy right after he was born
Courtesy of Mandeep Toor

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 to me. Inder told me that he’s absolutely beautiful, and looks just like our older son Sarvin. The OBGYN advised us that they were taking Devraj to the NICU for further monitoring and they will keep us posted with updates. It never once occurred to me that he could be ‘sick.’ Now that I reflect back, I was so naïve. I didn’t think something terrible could happen. I birthed my baby, we made it to the hospital in time – he was surrounded by caring, loving professionals that would do everything to make him better so we can take him home.

At 4:30 a.m. the same morning, we heard a knock on our door. The NICU pediatrician walked into our room and introduced herself. She began to say that there are concerns with Devraj’s wellbeing at this point – he was not okay, and for that reason, they’ve contacted SickKids in Toronto to transfer Devraj there. I began to cry and ask what was wrong. She couldn’t give me a definite answer but was pretty certain he would be okay. 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 of a nightmare. She asked if I was able to pull myself out of bed to go see Devraj before he was transferred to SickKids. I got up as quickly as I possibly could. 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. Once Inder made it to SickKids, I began to fight my way out of the hospital. I remember telling the nurses I was perfectly fine and needed to go see my baby; there was absolutely no reason for me to be in the hospital alone an hour away from my son in another hospital. The doctor finally came in to check up on me and to make sure my stitches looked somewhat like they should and discharged me.

Courtesy of Mandeep Toor

As the hours passed, the team of NICU doctors reassured Inder that Devraj was going to be okay. It appeared as though Devraj was just ‘slow’ to come around and that his lungs needed help. I remember Inder calling me with the good news, saying that our baby boy would be okay. That the doctors at SickKids felt that his diagnosis wouldn’t be of major concern. Due to the high expectations the doctors had of Dev, he was taken off ventilation that day, until he regressed and was in critical condition again. This is when all the red flags kicked in.

Inder kept me updated with what was happening at SickKids. He sent me a bunch of photos and videos of him talking to our little Devraj, 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 under so much stress. Dev’s blood pressure was skyrocketing; it was hard to find his pluses and his respiratory issues were unaccounted for. Nothing was making sense. There were no signs of infection as everyone had suspected. The doctors were just as confused as we were. There were no answers. They continued to give Dev medication for infections until there were concrete answers to what was really going on. A CT scan was ordered in hopes to catch something the doctors were missing. 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 the diagnosis they were giving Devraj.

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

Courtesy of Mandeep Toor

I remember ripping off my mask because it was so hard to breathe 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 was there, but not there at the same time. 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 Devraj is diagnosed with is incompatible with life.’

Devraj 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 of age. This disease causes an abnormal amount of buildup of calcium within the walls of the arteries making it harder for blood to flow to get to organs. This ultimately leads to a stroke, heart attack, and unfortunately death. This condition is so rare that it first surfaced in 1899 and since then, to date, 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, and he would beat the odds. We had hopes that Devraj would be a poster child that would make it through, and doctors would be thrown back by his resilience.

As the days went on, we made more use of our time. We stayed by Devraj’s bedside day and night. Regardless of day or time. Often we’d forget that we hadn’t even eaten because we were so wrapped up in Devraj’s love. We made arrangements to stay in Downtown, Toronto so that we can all be together and close to Devraj at all times.

On February 21st, 2021, the day Devraj 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. Since we were all together, time just flew. Inder and I were like two peas in a pod. We just made everything flow.

family all together after child was born
Courtesy of Mandeep Toor

By late February, Devraj’s blood pressure was finally under control. The doctors were pleased with how well he was doing, though his little heart could give out at any time. We made the best out of our time and made memories we’d cherish for a lifetime.

In the first week of March 2021, we were advised that we could start making a plan to transition Devraj 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. There was a lot to get covered but we saw that everyone was doing their absolute best so that we can finally go home and be a family under one roof.

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

big brother with his little brother
Courtesy of Mandeep Toor

On March 13th Dev wasn’t taking his feed like he normally did. Inder suggested that we try again in a little bit, it could just be he was full from his last feed since we were slowly increasing his milk intake. 5, 10, 15 minutes went by and he was still refusing his bottle. This was unlike our little guy. Not thinking too much into it, Inder hopped out of bed so I could get some shut-eye. I had been holding Dev all night and didn’t want to put him down. I ended up falling asleep at 6:30 a.m. that morning only to be awoken from a deep sleep by Inder.

For those of you that don’t know Inder, he doesn’t stress or panic unless it’s crucial. I could sense the tension from him and knew something was wrong. He said he tried to feed Dev but he kept refusing. I was so upset that Inder let me sleep; I felt horrible for not staying awake. As Inder handed Dev to me he asked me to pay close attention to Dev’s breathing. He said it sounded like his chest was rattling. I could hear it but I didn’t want to admit that I could. We both came down quickly and hoped and prayed everything was okay. Just to be on the safe side though, we called 911.

The paramedics were at our house within 3 mins and looked at Dev. They checked his vitals and blood pressure and couldn’t find anything wrong with him. He looked like a happy baby. However, Inder and I were both uneasy and still wanted Dev to be seen at SickKids. Since there was no form of urgency – the paramedics, Inder, and Dev began their drive towards SickKids. Inder was texting me the entire time letting me know that Dev was okay – his blood pressure was good, and his heart rate was where it should be. I remember texting Inder for an update and waiting a couple of minutes for him to respond. Nothing. The silence was deafening at this point. I frantically called Inder. No answer. I remember leaning over my kitchen sink wanting to throw up and hoping everything was okay.

little boy in nicu being comforted
Courtesy of Mandeep Toor

Inder then finally called me nearly half an hour after my last message to him. He was choking on his words. I couldn’t make out what he was saying. 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. I kept asking him what was wrong, and how Dev was doing. There was silence again. Some days these words replay 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 here 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.

I kept calling Inder on the way to the hospital asking him if Dev was still ‘okay.’ He then broke the news to me that Dev’s heart had stopped again. For eight minutes this time. The complex care team said things didn’t look good, and I needed to get there as soon as I possibly could. I recall making it to the hospital and seeing Dev hooked up to more machines than I had ever seen. Dev 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. For 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 me aside to let us know what was happening. 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 11:55 a.m. our baby boy Dev took his last breath in our arms before he left this world to be at peace.

Our baby boy fought so hard with every ounce in his 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. 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.”

Courtesy of Mandeep Toor
mom dad and brother in the grass
Courtesy of Mandeep Toor

This story was submitted to Love What Matters by  Mandeep Toor. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this here:

‘How is this real?!’ A baby fell into the toilet. I heard a loud, ‘Whaaa!’ I was 37, ‘infertile,’ and absolutely terrified.’: Mom unexpectedly births baby in toilet after battling PCOS, infertility for 13 years

‘It doesn’t matter if you’re white, black, brown, or yellow. If you’re healthy or unhealthy. Single, married, or divorced.’: Woman urges ‘miscarriage does not discriminate’

‘The nurse broke the news over the phone. ‘There’s no way to do a burial.’ My baby was placed in a round, plastic dish and simply sent off somewhere.’: Mom of angel baby urges ‘miscarriage matters’ after hospital negligence

‘She told me her breasts were sore and her period was late. ‘But I can’t get pregnant. I think there’s something else going on.’: Woman urges ‘if your friend has a miscarriage, don’t pretend it didn’t happen’

Do you know someone who could benefit from reading this? SHARE this story on Facebook with family and friends to let them know a community of support is available.

 Share  Tweet