Abby's Heart Friends Stories
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Mason
Mason was born with hypoplastic left heart syndrome which means he has no functioning left ventricle. In fact, he has no left ventricle at all, his aorta is extremely small. He has a very leaky tricuspid valve, problems with his pulmonary artery and bilateral superior cena cava. He is about to undergo his 3rd open heart surgery and 5th catheterization in his 2 years of life. He is such a strong boy and he enjoys playing with his trains, cars, laughing, and is very curious and loves to learn. His heart condition only limits the amount of what he can do but he is still very much a "normal" little boy. Support Mason by purchasing his T-shirts! |
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Kain
Kain is a crazy little 2 year old who has been through more in his short life than most of us ever will be. Kain was born with multiple congenital heart defects, which if left untreated via surgical intervention he would have passed away shortly after entering the world. Kain was born with Tricuspud Artresia, transposition of the great arteries, atrial septal defect, ventricle septal defect and interrupted aortic arch. Immediately following kains birth he was transported to the Hospital for Sick Children. Within the first moments of his life he was hooked up to heart monitors, oxygen saturation monitors and IV meds in order to keep him alive until surgery was booked. It was within the first 24 hours of his life that I was told his first open heart surgery would happen the next day, leaving very little time to emotionally prepare for it. At 36 hours old I handed my 7lb 6oz |
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son over to a nurse in hopes that he would return to me after the surgery was complete. After a 10 week stay and many complications in the hospital kain had gained enough strength to be allowed to go home. Once again at 5.5 months old kain was ready to go for his second open heart surgery. This one was much less complicated than the first and we were in and out within 5 days. Now where it gets difficult is after an open heart surgery you cannot lift your child under their arms for weeks depending on how they heal. Kain is being treated with a 3 stage surgical procedure. We have successfully completed stage 1 (norwood and BT shunt) and stage 2 (Glenn) and are approaching the third being his "Fontan". All named after famous surgeons who created the individual procedures. What is important for people to remember about congenital heart defects and these surgeries is that it does not 'cure or fix' him. They are not able to be cured. These surgeries are considered to be palliative procedures for the surgical management of his heart. His heart will be modified to work to the best of its ability and allow us as much time with him as possible. One thing about Kain is that he remains strong through all of it. Every poke every test and every surgery. He usually has a smile on his face and doesn't even cry for bloodwork anymore. But one thing he always has is a sparkle in his eye, that is what keeps me going.
Support Kain and KainsKrew by purchasing his T-shirts!
Support Kain and KainsKrew by purchasing his T-shirts!
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Ella
Ella was diagnosed with a severe heart defect called “Transposition of the Great Arteries” before she was born. With her particular diagnosis, it was extremely fortunate she was diagnosed prenatally. She received a heart catheter surgery immediately after she was born and had her first open heart surgery at 6 days old. After a very long and rocky recovery, at a month old, Ella required a second open heart surgery to fix an aneurysm. This was repaired with an artery that she received from a donor. Unfortunately her heart would not work after the surgery and she was placed on ECMO (highest form of life support) for four days. ECMO saved her but damaged her lungs, giving her Pulmonary Hypertension (PH). PH is where the lungs resist blood flowing to them, and the heart works too hard to pump the blood. A PH'ers heart works at a marathon pace 24/7. Ella is on oxygen 24/7 for her PH, and takes half a pill twice daily of a medication called Tracleer. Tracleer costs over $50,000 per year. Thank goodness for benefits Altogether, Ella has had 2 open heart surgeries, 5 heart catheter surgeries and 1 chest debridement surgery. She will be having her 6th heart catheter surgery in April to see if the Tracleer is helping her PH. Ella is 2 and does not let her diagnosis or oxygen slow her down. Her and big brother Cameron have a great time playing and recently enjoyed a trip to Disney. |
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Alivia
Alivia Katharine Delbove. Born Dec 14 2012. Diagnosis is HRHS - ASD, VSD, tricuspid atresia, pulmonary stenosis as well as an azygos continuation off her IVC and only 1 functioning lung. We did not find out about Alivia's CHD until she was about 20mins old. She is a twin born full term. She had a BT shunt at 5 days old and her Glenn at 7mths. 1st hospital stay was 3 months and the second was 1 month. She was also hospitalized for 2 weeks at 1yr old for RSV. Alivia just had her prefontan cath on Jan 22nd and is up for discussion for her Fontan presently. Alivia is currently on no meds but has a gtube for weight maintenance. Alivia is only 12kg. |
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Jacob
After trying for quite some time, we found out we were pregnant again! Things were going smoothly until our 20 week ultrasound. The technician was having a hard time seeing everything needed, so she called in another technician to see if perhaps she could get it all, but to no luck. I was rescheduled to go back in two weeks later, and again, they had no luck. I overheard the technician asking if she should call in the radiologist to read the scan, to see if perhaps he could see what they were missing. As I went on my way, I called my mom to let her know how my scan went. I didn't even have the courage to say "They still couldn't ..." and the tears came rolling down my face. I knew something was wrong. Later that afternoon, the phone rang. It was my midwife. As I answered and said hello, I could hear in her voice that something was wrong. She read me the results of the ultrasound ... "Could not see all 4 heart chambers". My heart sunk, and the tears slid down my cheek. We had to go to Sunny Brook Hospital in Toronto to have a echocardiogram done to investigate further. It was November 20th, 2013 - my husband's birthday. A day we will never forget. We found out we were having a little boy, but he was a little boy with a special heart. He was diagnosed with Hypoplastic Right Heart Syndrome (HRHS). Everything was such a blur. All we could do as a family was cry. Our daughter was born as such a healthy little girl, how could this be happening? Happening to my family? We were closely monitored here in my hometown of Sudbury, ON, as well as Toronto. We had plans to deliver at Mt Sinai Hospital in Toronto as Jacob would need a life saving medication immediately after birth in order for him survive until his first of three surgeries. We had to deliver in the operating room alongside the resuscitation team, as well as a team of doctors and nurses. Jacob was born March 6th, 2014 weighing a healthy 6lbs, 4 oz. He was just as they described he would be - a beautiful little boy, a beautiful little blue boy. Jacob was whisked away to the adjoining room in order to be hooked up immediately to machines as well as medication to help him on his fight for life. He was then transported over to Sick Kids where he was able to rest while he awaits his first major open heart surgery.
Jacob underwent his BT Shunt surgery at only 4 days old. After a few complications and set backs, he was discharged from Sick Kids March 28th, 2014. I was so nervous to bring him home. How would our daughter adjust to having a sick brother? Would she understand? But when I got home, those worries went away. We quickly got into a routine and life went on as planned. Jacob was a stable baby. He required home care for the first few months of life, as he prepared for his next surgery, the Glenn operation. He underwent his Glenn at 6 months of age. Aside from Jacob having a hard time with his oxygen saturations, that recovery was the fastest one yet. He was discharged only 5 days after his operation.
That sweet little blue boy is now nearing his second birthday. He is as stable as he will ever be, given his diagnosis, but he is full of life. His smile and giggles light up the whole world - my whole world. He has so much love to offer, and it melts my heart. Aside from a few medications and oxygen saturation monitoring done by myself, Jacob does not require any home care for the time being. He is currently in Physiotherapy as well as Speech Therapy to help him catch up to where he needs to be. After his first surgery, Jacob suffered a stroke and the doctors aren't sure if the stroke is what has affected his speech and walking, or if it's just a delay related to his heart however early intervention is definitely working in our favour.
We are currently gearing up for his third and hopefully final surgery, the Fontan. Jacob will be getting his surgery nearing the age of 3, which leaves us roughly a year to prepare. He will continue doing his regular echocardiograms, his ecg's, his bloodwork, as well as any other tests the cardiologists and other physicians need to perform. But for now, Jacob is healthy and fighting the best fight he can. With the love and support from our family and friends, as well as other heart families, we can overcome anything!
After trying for quite some time, we found out we were pregnant again! Things were going smoothly until our 20 week ultrasound. The technician was having a hard time seeing everything needed, so she called in another technician to see if perhaps she could get it all, but to no luck. I was rescheduled to go back in two weeks later, and again, they had no luck. I overheard the technician asking if she should call in the radiologist to read the scan, to see if perhaps he could see what they were missing. As I went on my way, I called my mom to let her know how my scan went. I didn't even have the courage to say "They still couldn't ..." and the tears came rolling down my face. I knew something was wrong. Later that afternoon, the phone rang. It was my midwife. As I answered and said hello, I could hear in her voice that something was wrong. She read me the results of the ultrasound ... "Could not see all 4 heart chambers". My heart sunk, and the tears slid down my cheek. We had to go to Sunny Brook Hospital in Toronto to have a echocardiogram done to investigate further. It was November 20th, 2013 - my husband's birthday. A day we will never forget. We found out we were having a little boy, but he was a little boy with a special heart. He was diagnosed with Hypoplastic Right Heart Syndrome (HRHS). Everything was such a blur. All we could do as a family was cry. Our daughter was born as such a healthy little girl, how could this be happening? Happening to my family? We were closely monitored here in my hometown of Sudbury, ON, as well as Toronto. We had plans to deliver at Mt Sinai Hospital in Toronto as Jacob would need a life saving medication immediately after birth in order for him survive until his first of three surgeries. We had to deliver in the operating room alongside the resuscitation team, as well as a team of doctors and nurses. Jacob was born March 6th, 2014 weighing a healthy 6lbs, 4 oz. He was just as they described he would be - a beautiful little boy, a beautiful little blue boy. Jacob was whisked away to the adjoining room in order to be hooked up immediately to machines as well as medication to help him on his fight for life. He was then transported over to Sick Kids where he was able to rest while he awaits his first major open heart surgery.
Jacob underwent his BT Shunt surgery at only 4 days old. After a few complications and set backs, he was discharged from Sick Kids March 28th, 2014. I was so nervous to bring him home. How would our daughter adjust to having a sick brother? Would she understand? But when I got home, those worries went away. We quickly got into a routine and life went on as planned. Jacob was a stable baby. He required home care for the first few months of life, as he prepared for his next surgery, the Glenn operation. He underwent his Glenn at 6 months of age. Aside from Jacob having a hard time with his oxygen saturations, that recovery was the fastest one yet. He was discharged only 5 days after his operation.
That sweet little blue boy is now nearing his second birthday. He is as stable as he will ever be, given his diagnosis, but he is full of life. His smile and giggles light up the whole world - my whole world. He has so much love to offer, and it melts my heart. Aside from a few medications and oxygen saturation monitoring done by myself, Jacob does not require any home care for the time being. He is currently in Physiotherapy as well as Speech Therapy to help him catch up to where he needs to be. After his first surgery, Jacob suffered a stroke and the doctors aren't sure if the stroke is what has affected his speech and walking, or if it's just a delay related to his heart however early intervention is definitely working in our favour.
We are currently gearing up for his third and hopefully final surgery, the Fontan. Jacob will be getting his surgery nearing the age of 3, which leaves us roughly a year to prepare. He will continue doing his regular echocardiograms, his ecg's, his bloodwork, as well as any other tests the cardiologists and other physicians need to perform. But for now, Jacob is healthy and fighting the best fight he can. With the love and support from our family and friends, as well as other heart families, we can overcome anything!
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Cordelia
Cordelia Petrenko McAuley is two years old. She was diagnosed during her 20week fetal development ultrasound with d-Transposition of the Great Arteries and a VSD. She was born at Mount Sinai and immediately transferred to sickkids where it was determined she had no VSD and she would require a balloon arterial septostomy immediately. When she was five days old she underwent OHS, the arterial switch operation. She had some complications during recovery which required a longer hospital stay, but after 24 long days was released to the near by RMH. She had wound and weight checks at SK for a week before being given the green light to go home for her first time. Cordelia sees her cardiologist once a year and is doing amazingly well. It is our hope that she will not require further intervention. |
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William
William was born via emergency c-section 14 days past his due date during a snowstorm. Two days after he was born, our midwife heard a loud murmur in his chest. She told us about the murmur and asked if I was up to taking William to the hospital in Orillia as our hospital in Collingwood does not have a NICU. We were very nervous but immediately set out on the 1hr 15min drive to Orillia. We were there for three days of monitoring as it was the weekend and Sick Kids could not take us. Monday finally arrived and an ambulance was available to take us to Sick Kids. After relaying our story to the Paramedics, they faked a lack of gas in their vehicle to ensure we would have an ambulance available when our traveling nurse arrived. Once the nurse arrived, the ambulance sped off with her and William while Shawn and I followed shortly thereafter. We were both scared and had no idea what to expect. We were finally reunited with our son while he was having his very first Echo. The nurse who traveled with him stayed with us throughout this entire experience. William then had an ECG and we waited for an appointment with his new cardiologist, Dr. Bradley. Eventually, we were called in to an office to meet with Dr. Bradley. As kindly as he could, he explained that William had Tetralogy of Fallot, a heart defect made up of four issues. I can honestly say that after this point I cannot remember much more about the appointment. I was in tears wondering how this happened to our son. What had I done while I was pregnant to have caused this to happen? Dr. Bradley kindly pointed out that it was nothing to do with me and that the causes are generally unknown. Our son was 1 in 100. The months passed by with various appointments at Sick Kids and Williams surgical date was finally set. At 5 months old, on June 17th, 2015, we handed our baby boy over to an anesthesiologist who would take him into surgery with Dr. Hickey. We were very fortunate to be able to stay at Ronald McDonald House for this stay. One week after his surgery, we were heading home. On March 2nd, 2016, William will undergo a catheterization procedure to make his arteries larger as they are far too small. Please keep our son in your thoughts! |
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Nicholas
Nicholas was born with TGA and VSD on Dec.27.15 at a very healthy weight of 8.4 pounds. I found out about his condition very early on in my pregnancy. While we had time to mentally prepare for what was to come, I don’t think anyone ever really could. We definitely couldn’t. One of my fears while pregnant was that I wouldn’t make it to Mt.Sinai to deliver. I ended up having a good friend of mine take me down at about 3am for piece of mind as I was feeling off the day before. I ended up being admitted because I was indeed in labor at 39 weeks pregnant that day - and I didn’t even know it!
Even though my first labor was really quick, Nicholas took his sweet time coming into this world. He gave the medical team and everyone that needed to be there enough time to get to us and we were all well prepared and ready to go as we awaited his arrival. Nicholas was born that day at 2:32pm in the operating room that was joined with the resuscitation room where the team was on stand by. I got to see him for a few short seconds before he was taken away. The whole delivery went smoothly and Nicholas didn’t require resuscitation and was started on a prostaglandin infusion. I was able to see him again for a few minutes before he was taken to Sick Kids CCCU.
Nicholas underwent the balloon atrial septostomy later that evening with good results showing on the post echocardiogram. He was successfully extubated on the 28th and moved up to the cardiology ward - 4D on the 29th to await surgery.
Jan.6 was the big day - surgery. By that time, Nicholas was feeding orally like a champ and was back on oxygen as his SATS kept dipping. Once we stepped into the room where he would be taken from, I was overwhelmed with emotion that I was unable to control. That’s where and when the reality of what was about to happen hit me the hardest. They were taking my 10 day old baby boy from me and were going to to perform open heart surgery. That very second I remember thinking to myself that I may never see him again and that thought alone scared the sh** out of me! That second that they took him in their arms and started to walk away, was one of the hardest in my life. I became numb and stayed that way for the next 10 hours - 9 hours and 10 min being the time it took to start and complete the surgery. He was operated on by Dr. Van Arsdell and Dr. Hickey. He ended up having the SWITCH done, a VSD and an ASD closure as well as a PA PATCH PLASTY. Nicholas ended up experiencing Tachycardia and some hemorrhaging following surgery. He wasn’t able to be fully closed until Jan.9. Nicholas was extubated on Jan.13 and put back on oxygen on the 15th with the High Flow nasal cannula. Once he was taken off of muscle relaxants, it was nice to finally see him moving a little. Nicholas had quite a few complications as the team would always say - one being his diagnosis of chylothorax before he was finally moved back up to 4D on January 16. By January 19, many of his different tubes were already removed and his morphine was decreased - enough dosage for dependency reasons and not so much for pain anymore. After a few more ups and downs, Nicholas was discharged on the 24th - 3 days before he would turn a month old. He came home on LASIX and RANITIDINE as well as TYLENOL and MORPHINE to be given as needed.
We spent one night at home only to get a glimpse of what life was going to be like for us now with a heart child the following evening when we took him back to EMERG because of things that we were concerned with. I’ll never forget being told that the hospital is basically going to become our second home through out the years because nothing can be taken too lightly when it came to Nicholas and his health, including what would seem like a common cold to us. We have now been home for almost 2 weeks and things are great. It’s hard to believe just by looking at him what he’s already been through.
Because of the chylothorax, Nicholas was put on a special low fat diet while in the hospital that needs to be continued following discharge and the removal of his last chest drain. I’m not going to say it is easy. It was definitely very overwhelming at first with having to do so much. Because my breastmilk is being used in his special diet, i am having to pump and put my milk through a process called “spinning”, where my milk is spun and the fat is separated. I then have to carefully remove the fat and follow a special recipe to make the feed. The first time i made his 24 hour feed, I broke down and cried. It took me 3 hours - 2.5 of those hours being the spinning and defatting of the breastmilk. I was ready to throw in the towel that early on. There was no time for anything. If I was’t pumping, I was making his feed. If I wasn’t feeding him, I was changing him. If I wasn’t changing him, I was trying to put him to sleep. If I wasn’t doing that, I was doing all of those similar things with my almost 2 year old, and if not that, then I was finally able to go to the bathroom, or to shower, or to eat, or throw out the garbage, or clean, or many other 100’s of things I felt needed time to get done. I was stressing so much also because I began experiencing a problem with my milk supply that i was so very much relying on. Then I got thrush. Then my breast pump started breaking down. I was (and still am) so frustrated. I am still currently trying to fix my milk situation and still very much stressed out but feeling better about all of the other things. My daughter continues to go to Grandma’s a few times a week to allow me to get extra stuff done but I still cannot manage to get much done. Bryan, Nicholas’ dad tries to help wherever he can but there still seems like there is so much to do. I am CONSTANTLY tired and only getting a few hours of sleep a night. Nicholas sleeps well but needs to be fed and I need to pump. But truth be told, I rather be tired all the time and have no time for anything than to change these past few months. I look at my precious little miracles face and everything and I mean EVERYTHING is soo worth it! He’s here and that’s all that matters. I would do it all, OVER AND OVER again. He is my little CHD survivor, my sweet little heart warrior, my brave hero, my superman. I know that we may face bumps ahead and that it may not always be smooth sailing but I am ready for that. We will take it on one day at a time, one heart beat at a time. Am I scared? Of course…but he has amazed me so much already and I am so very proud of him and I believe that he will be just fine. He now carries his battle scars that are proof of just how strong he is…how tough he is even though he is still so small. I love him so very much!
“Sometimes real superheroes live in the hearts of small children fighting big battles”
Nicholas was born with TGA and VSD on Dec.27.15 at a very healthy weight of 8.4 pounds. I found out about his condition very early on in my pregnancy. While we had time to mentally prepare for what was to come, I don’t think anyone ever really could. We definitely couldn’t. One of my fears while pregnant was that I wouldn’t make it to Mt.Sinai to deliver. I ended up having a good friend of mine take me down at about 3am for piece of mind as I was feeling off the day before. I ended up being admitted because I was indeed in labor at 39 weeks pregnant that day - and I didn’t even know it!
Even though my first labor was really quick, Nicholas took his sweet time coming into this world. He gave the medical team and everyone that needed to be there enough time to get to us and we were all well prepared and ready to go as we awaited his arrival. Nicholas was born that day at 2:32pm in the operating room that was joined with the resuscitation room where the team was on stand by. I got to see him for a few short seconds before he was taken away. The whole delivery went smoothly and Nicholas didn’t require resuscitation and was started on a prostaglandin infusion. I was able to see him again for a few minutes before he was taken to Sick Kids CCCU.
Nicholas underwent the balloon atrial septostomy later that evening with good results showing on the post echocardiogram. He was successfully extubated on the 28th and moved up to the cardiology ward - 4D on the 29th to await surgery.
Jan.6 was the big day - surgery. By that time, Nicholas was feeding orally like a champ and was back on oxygen as his SATS kept dipping. Once we stepped into the room where he would be taken from, I was overwhelmed with emotion that I was unable to control. That’s where and when the reality of what was about to happen hit me the hardest. They were taking my 10 day old baby boy from me and were going to to perform open heart surgery. That very second I remember thinking to myself that I may never see him again and that thought alone scared the sh** out of me! That second that they took him in their arms and started to walk away, was one of the hardest in my life. I became numb and stayed that way for the next 10 hours - 9 hours and 10 min being the time it took to start and complete the surgery. He was operated on by Dr. Van Arsdell and Dr. Hickey. He ended up having the SWITCH done, a VSD and an ASD closure as well as a PA PATCH PLASTY. Nicholas ended up experiencing Tachycardia and some hemorrhaging following surgery. He wasn’t able to be fully closed until Jan.9. Nicholas was extubated on Jan.13 and put back on oxygen on the 15th with the High Flow nasal cannula. Once he was taken off of muscle relaxants, it was nice to finally see him moving a little. Nicholas had quite a few complications as the team would always say - one being his diagnosis of chylothorax before he was finally moved back up to 4D on January 16. By January 19, many of his different tubes were already removed and his morphine was decreased - enough dosage for dependency reasons and not so much for pain anymore. After a few more ups and downs, Nicholas was discharged on the 24th - 3 days before he would turn a month old. He came home on LASIX and RANITIDINE as well as TYLENOL and MORPHINE to be given as needed.
We spent one night at home only to get a glimpse of what life was going to be like for us now with a heart child the following evening when we took him back to EMERG because of things that we were concerned with. I’ll never forget being told that the hospital is basically going to become our second home through out the years because nothing can be taken too lightly when it came to Nicholas and his health, including what would seem like a common cold to us. We have now been home for almost 2 weeks and things are great. It’s hard to believe just by looking at him what he’s already been through.
Because of the chylothorax, Nicholas was put on a special low fat diet while in the hospital that needs to be continued following discharge and the removal of his last chest drain. I’m not going to say it is easy. It was definitely very overwhelming at first with having to do so much. Because my breastmilk is being used in his special diet, i am having to pump and put my milk through a process called “spinning”, where my milk is spun and the fat is separated. I then have to carefully remove the fat and follow a special recipe to make the feed. The first time i made his 24 hour feed, I broke down and cried. It took me 3 hours - 2.5 of those hours being the spinning and defatting of the breastmilk. I was ready to throw in the towel that early on. There was no time for anything. If I was’t pumping, I was making his feed. If I wasn’t feeding him, I was changing him. If I wasn’t changing him, I was trying to put him to sleep. If I wasn’t doing that, I was doing all of those similar things with my almost 2 year old, and if not that, then I was finally able to go to the bathroom, or to shower, or to eat, or throw out the garbage, or clean, or many other 100’s of things I felt needed time to get done. I was stressing so much also because I began experiencing a problem with my milk supply that i was so very much relying on. Then I got thrush. Then my breast pump started breaking down. I was (and still am) so frustrated. I am still currently trying to fix my milk situation and still very much stressed out but feeling better about all of the other things. My daughter continues to go to Grandma’s a few times a week to allow me to get extra stuff done but I still cannot manage to get much done. Bryan, Nicholas’ dad tries to help wherever he can but there still seems like there is so much to do. I am CONSTANTLY tired and only getting a few hours of sleep a night. Nicholas sleeps well but needs to be fed and I need to pump. But truth be told, I rather be tired all the time and have no time for anything than to change these past few months. I look at my precious little miracles face and everything and I mean EVERYTHING is soo worth it! He’s here and that’s all that matters. I would do it all, OVER AND OVER again. He is my little CHD survivor, my sweet little heart warrior, my brave hero, my superman. I know that we may face bumps ahead and that it may not always be smooth sailing but I am ready for that. We will take it on one day at a time, one heart beat at a time. Am I scared? Of course…but he has amazed me so much already and I am so very proud of him and I believe that he will be just fine. He now carries his battle scars that are proof of just how strong he is…how tough he is even though he is still so small. I love him so very much!
“Sometimes real superheroes live in the hearts of small children fighting big battles”
Gideon
A video capturing some of the moments of baby Gideon who spent his entire 409 days of life in hospital. The family has started a blood drive in his honour to collect 409 units of blood by the year end. Help them find purpose and meaning in his life by helping them reach their goal. Book your appointment and give them his partner id # INHO368016 to help make your donation count.
A video capturing some of the moments of baby Gideon who spent his entire 409 days of life in hospital. The family has started a blood drive in his honour to collect 409 units of blood by the year end. Help them find purpose and meaning in his life by helping them reach their goal. Book your appointment and give them his partner id # INHO368016 to help make your donation count.
