June 2004 – 22nd October 2004
My son Colin was born with a clean bill of health. He was born at 40 weeks, induced labour. He was a beautiful 7lb 2 oz. My second son, it seemed like my life was going to be a little crazy since I was adding another baby to the mix of my already crazy house. Colin was such a good baby. He slept a lot, and barely cried. He didn’t even want to eat that much. I constantly thought “how lucky am I?!” he is a great sleeper!! I was so wrapped up in my other son, that I didn’t notice things were not right… On July 17th, I changed Colin on the living room floor, and he didn’t cry. Most newborns cry when they are undressed even including the diaper, and cold. The fan was blowing, yet not a peep from Colin. I was a little concerned, but figured as long as he looked okay, there is no reason to worry. That night, I started to realize after a busy
day, Colin had barely ate any food. The bottle of pumped breast milk from that early evening still had formula in it, and he wouldn’t even finish a 2 oz bottle. That night, I carefully watched the amount of food he was drinking, Instead of dumping the extra formula, I measured it, then dumped it. To keep track.
The next day was Sunday. I knew that the doctor was closed. I decided to get him dressed and make a stop at the ER, after we all had breakfast. He started to cry – but he was not crying normally. He was gasping in between a whine – I noticed he looked a little funny (yellowish tint to his mouth and skin) so I asked my husband to skip breakfast while I called the doctor.
I was tired of waiting for the doctor to call back on a Sunday morning, so I started for the hospital (a 25 min ride). On my way to the hospital, Colin started to sound even worse. I jumped in the back seat, and talked to him till we got there. My Husband dropped us at the door, and that was where it began.
The triage nurse asked why we were here, and I calmly told her, that my son was not eating a lot, and he seemed to be breathing funny (thinking he might have gotten a cold, from the AC in our house, or just mucus in his lungs) she took one look at Colin, in my arms, grabbed him from me, took my hand and started to RUN down the hall, while she hit the code blue button on the side of the wall. I didn’t even have a chance to look back for my husband who was still parking the car.
Colin had all the alarms in the hospital going off. All these doctors and nurses were running to his side. He was this TEENY 7 lb baby lying in a full size bed. The triage nurse came out to talk to me. “They will take care of him, can I call someone for you?” I just looked at her puzzled. “No” I answered. My husband walked in and could not figure out what was going on. They tried to get the IV in through his umbilical cord, but it had fallen off days after being born (should have been my first clue something was not right). They ended up putting a shunt into his leg bone, to get direct access to his blood supply. It was the most direct route because they could not even get a vein to get blood, or inject blood. His heart was in horrible condition. I was told later, this is the LAST resort they use on a person or baby. They will not do this, because its a HUGE risk of infection. My son had so many wires and injections all over his little body as doctors continued to run and swarm. The nurse brought up the priest for me, that was when I broke down. I sobbed until I couldn’t breathe. I realized it was bad – you only see the priest if there is something seriously wrong. That triage nurse told me, that he was severly cyanotic and very close to death. She said “ another 10 minutes and he would have been dead on arrival”. They decided to take him to the local Childrens Hospital, for further evaluation. I was told he either had a Congenital Heart Disease (CHD), or had some kind of bacterial infection. I was dumbfounded. I never thought it could be heart disease, I was banking on the infection because heart disease only happened to older people. Not healthy 10 day old babies.
So, my second child, 10 days old, and I was explained that there was something called CHD. I never knew of or heard the term before. I learned it’s something that children are born with, and can be undetected for some time. I can’t believe that after having two children, no one told me about this!?? I then learned it was the #1 birth defect, and it made me mad. I never knew something like this could happen. Then I got even MORE mad when I learned that two of my cousins, also at a young age were treated for CHD. I just thought it had something to do with Genetics, and it was something that would never happen to me. I was too young at the time to understand!
Colin was put in a medical coma for the next 15 days. They were waiting for the all mighty “best pediactric cardiologist” to come home from a conference in Poland. They consulted with him on Colin’s case, because he was not textbook at all. He had an unusual defect, which caused his Left Ventricle to not beat completely – it was like a misfire. Instead of beating and sqeezing the blood, it was just backing up, and not pumping out completely. His heart was the size of his entire chest. The X-rays showed how enlarged it was. Colin was treated as a Hypoplastic Left Heart Syndrome (HLHS) patient and open heart surgery was performed when he was three weeks old on July 30, 2004. He slowly recovered and came home with us after many hurdles, and unsure what that surgery would even do to him. They knew it worked with other HLHS patients, without the LV, but with Colin, he still had the LV. It created a drag on his heart.
He was sent home on August 20, 2004. I immediately took him to get his portraits done, for a keepsake. I was so proud of my heart baby. I showed everyone his battle wounds and started to talk about our ordeal to anyone who would listen. The more people that knew, the better!
After weekly visits to the doctors at the hospital to check on his progress, and many more visits to his regular pediatrican to check weights and other organs, he was scheduled for his second stage of the open heart surgery. October 20, we went back to the hospital for a routine heart cath to check his pressures for his next surgery. He had a small clot in one of the arteries, which was cleared, and on his way to the recovery room. The clot caused it to be difficult to get in his artery to do the cath. During the procedure, his artery was punctured. No one, including the doctor, knew that this had happened. He lay in the recovery room, for the next 6 hrs on his back, flat to reduce the risk of bleeding. They started him on a blood thinner to avoid the clot coming back in his heart until he was fit for his surgery. This was a deadly mistake. The artery that was punctured, was bleeding internally, and it took about 1 hour for his body to be filled internally with blood, and stop his heart and damage his organs. He coded in my arms, while not on a monitor, so there was no warning.
They rushed him back to surgery, to find out what had happened. When discovered, they decided to clamp his artery to stop the bleeding because the blood thinners made it impossible to stop it. The next 49 hours were the longest of my life.
The doctors worked around the clock, trying to recover what had happened to him. They replaced his blood with plasma (clotting factor) and other things to try to help. Eventually, we were told that he was going to lose his leg because of the artery that was clamped. He needed a liver transplant, a kidney transplant, his spleen was damaged, and his bowels had died, so only 3% were left which would leave him with a colostomy bag for the rest of his life. Not to mention his heart condition that was still jepordizing his life.
We made the awful decision with the help of the doctors, that he was probably beyond repair. They said they would be suprised if he lived through the night. He was already on life support and crashed two more times in that 49 hours.
My husband and I decided to let our angel go home after the worst 49 hours of our lives. Colin died at 8:10pm on October 22, 2004
Wrote by Sibahan Sanders
Sibahan Sanders has given CHD-UK permission to use the photographs on this page.