I’m a guy and I like to fix things… I like to study what’s wrong with something and come up with a solution… The day we found out about our child having Hypoplastic Left Heart Syndrome, surely something was overlooked and I could come up with some recommendation on how to “fix” this.
I’ve gone with Gabby to every ultrasound appointment and I remember the 20th week appointment, it seemed a little longer than usual. I remember him pointing out all the organs, the placenta, the feet, the hands, the head… but then quickly passing over the heart. The heart sound clip was short and not really showing the heart. The technician never said anything but gave us the typical black and white printout of a picture that only a mom and dad could or would be excited about yet we still share “this” picture with our friends and family. The next day Gabby got a call from our family doctor and asked us to come in. Basically, she just told us that there might be ‘something’ and they just wanted to refer her to BC Women’s Hospital to folllow-up. We went in around her 22nd or 23rd week and I remember them focusing in on the heart… I kept to myself but kept wondering, what could be wrong? I stared at the screen trying to interpret what they were looking at and listening intently to what they were saying. I could see the heart clearly and it was pumping away except it I remember having the thought of, are we only looking at one side? Usually they say something like “and there are the 4 chambers of the heart” and I remember clearly seeing 4 chambers with our other 2 children. I couldn’t this time but never really paid attention to it because I figured I probably didn’t know what I was looking at. After the 2 or 3 doctors and a student were doing the fetal echocardiogram (as it turns out this wasn’t just an ultrasound) we were asked to go to a meeting room where, if I remember correctly, we sat with a cardiologist, a social worker, a cardiac nurse and the student. It was then we were told of the condition our unborn child had. I still remember the words “Hypoplastic Left Heart Syndrome” ringing in my ear. I remember, phrases like “without intervention the baby will only live hours to a week”, “HLHS”, “Norwood”, “Heart Transplantation”. I wasn’t absorbing everything and my wife was beside me crying and I couldn’t do anything except hold her hand and listen. It was frustrating and sad at the same time… Eventually I couldn’t “stay strong” and my eyes began to well up. I tried to hold as much tears in my eyes as possible before making the motion to wipe them away. I didn’t want Gabby to see but eventually she glanced at me…. I can’t think by now and I’m staring at these scribbles the cardiologist is trying to draw in front of me using words and acronyms that he thinks I’m understanding. I’ll google this later I thought (hah!). The cardiologist asked if we had any questions and I said not really at this time, just need to absorb the news. Options that were brought up were 1) termination (which Gabby promptly interrupted and said that’s not an option. They explained that they had to present the option and good that they don’t have to discuss this further) 2) A series of 3 heart surgeries and 3) heart transplant. He left and the social worker talked to us and just calmly and as “non-doctor-terminology” as possible tried to review the issue. We talked a little about the Norwood Procedure but again I wasn’t absorbing the information. I don’t know why but I started to get a little annoyed at the student being there. This person wasn’t contributing but just observing and I thought to myself, nobody really asked us if a student could be present. I really just wanted to get out of there, it was too much for one day. We would continue the talks another day. I prayed silently to myself that God please guard our hearts and minds during this time and to not let ourselves make wrong decisions during a time of high emotion.
Gabby and I left the hospital with a package under our arm about the congenital heart defect and not really saying a word about anything that just happened. We just held each other as we walked to the truck. We drove out silently and I paid the ridiculous parking bill of $12.
After picking up something quick to eat, we finally arrived home and immediately of course, I started to google. More phrases like “fatal unless life prolonging operations” or “70% success rate”, “Norwood”, “Glenn”, “Fontan” were popping up. Again, being the guy, statistics were big for me. I was confused because a lot of information was saying 70% success for the first surgery, but i was also hearing things like 85%, 90%, 95% success from Womens. I kept doing calculations in my head, “if they keep bumping the percentage by ‘5’, I wonder how many surgeries have actually been performed? It couldn’t be that many. it was a question i would surely ask in our next meeting. I also found out that as early as 20 years ago, they just started doing these “Norwood Procedures” and long term prognosis is unknown. Also, its likely the child will need a transplant later in life and that these operations are not a cure or “fix”, but life prolonging steps. The “Norwood” would happen within the first week after birth, followed by the “Glenn” at around 6 months and the “Fontan” at 2-3 years. I wondered to myself, is this an experiment? I had serious problems with this and thought to myself of the first infants that had the first operations thinking about the doctors, “oh that first operation seems to only be good for 6months, what can we do… lets do this… but thats only good for a couple years… lets add this operation….” I was getting more and more concerned this was an experiment and even wondered if my child was going to be another experiment to “further medical science”. I then had the immediate thought of, “well even if that’s the case, maybe that’s what God intends to use our child to help another child another day? Maybe he chose us because he knew the parents we would be”.
I needed to explore the options, heart transplant, Norwood+Glenn+Fontan operations, & compassionate care. i don’t know why I never really considered heart transplantation, but it just didnt seem right to me. I still don’t know why I feel that way. Perhaps its knowing of the risks of anti-rejection medication that lowers the immune system and how hard an infants body would fight to reject the foreign organ. I couldn’t shake those thoughts nor could I shake the thought of waiting for a newborn heart with a lot of other people who were on a waiting list. I couldn’t imagine ever having to face those families who didn’t receive a heart in time. The source of the hearts are usually from infants who have suffered severe head trauma. It all just bothered me inside.
With all the statistics and opinions of various heart specialists and information given, I even considered compassionate care. I really really struggled with my child being the subject of a relatively new procedure that could easily be an experiment. A couple decades ago, it seems that compassionate care was really the only option after the child was born. Compassionate Care is the term used to just make the infant comfortable for the duration of their expected life which was typically between 2hrs and a week… I wrestled with this for a number of weeks and prayed for God’s guidance and for him to reveal what he would like us to do. I thank God to this day that medical science has allowed us to pray and have others pray for us and give us the opportunity to do what’s best. For compassionate care, I could not see myself having to go through having to bury my own child! I would always remember Gabby saying to me on occasion before any of this even happened that ‘no parent should have to bury a child of theirs’. One day I bought the book online called “Waiting With Gabriel” and I read the entire book one evening in about 6 hours. For any of you that know me that well, know that I have never read a novel/book from end to end nevermind in one night! The experiences and the emotions this person was going through were exactly mine at the stage we were currently at. When I finally got to the part of her choosing compassionate care and her experience, I couldn’t place myself there. I had to do something … After a lot of prayer for God to reveal to us what we should do, Gabby and I eventually just came to a common conclusion without too much discussion and that was to proceed with the 3 operations. Gabby and I discuss quite frequently that we don’t know where we would be today if God was not in our lives. I cannot help but think that everything that has happened to me in the last 6 years was Gods plan for me. From meeting Gabby 7 years ago and debating hardly about God, the Bible and Marriage (of course you know who won 😉 Its amazing to look back and see that me debating so hard that I dug into the bible and the truth was revealed to me in a different way!), to finally arriving at Maple Ridge Alliance Church, to taking Alpha, to inviting and accepting Jesus Christ into my life, to taking the Philippians course, to getting premarital counseling, to getting married, to submitting to all my fears of getting in front of the congregation and sharing my testimony and being obedient to be baptized , to taking the Marriage Course, and taking it again (and will again!)… all at the same time immersing myself more and more into his Word….. Where would I be today without God? I couldn’t tell you but I have a feeling I might/could have been angry, bitter, and depressed… I give all the glory to Him for getting me to where I am today. Thank you Lord!
I know I have a lot more to share and am missing a number of other moments but I did want to get started on something. I may revisit this post from time to time adding more thoughts.
Today… We are in Edmonton, Alberta awaiting the arrival of our precious gift.
I’m a guy and I like to fix things… I like to study what’s wrong with something and come up with a solution… The day we found out about our child having Hypoplastic Left Heart Syndrome, surely something was overlooked and I could come up with some recommendation on how to “fix” this.
I’ve gone with Gabby to every ultrasound appointment and I remember the 20th week appointment, it seemed a little longer than usual. I remember him pointing out all the organs, the placenta, the feet, the hands, the head… but then quickly passing over the heart. The heart sound clip was short and not really showing the heart. The technician never said anything but gave us the typical black and white printout of a picture that only a mom and dad could or would be excited about yet we still share “this” picture with our friends and family. The next day Gabby got a call from our family doctor and asked us to come in. Basically, she just told us that there might be ‘something’ and they just wanted to refer her to BC Women’s Hospital to folllow-up. We went in around her 22nd or 23rd week and I remember them focusing in on the heart… I kept to myself but kept wondering, what could be wrong? I stared at the screen trying to interpret what they were looking at and listening intently to what they were saying. I could see the heart clearly and it was pumping away except it I remember having the thought of, are we only looking at one side? Usually they say something like “and there are the 4 chambers of the heart” and I remember clearly seeing 4 chambers. I couldn’t this time but never really paid attention to it because I figured I probably didn’t know what I was looking at. After the 2 or 3 doctors and a student were doing the fetal echocardiogram (as it turns out this wasn’t just an ultrasound) we were asked to go to a meeting room where, if I remember correctly, we sat with a cardiologist, a social worker, a cardiac nurse and the student. It was then we were told of the condition our unborn child had. I still remember the words “Hypoplastic Left Heart Syndrome” ringing in my ear. I remember, phrases like “without intervention the baby will only live hours to a week”, “HLHS”, “Norwood”, “Heart Transplantation”. I wasn’t absorbing everything and my wife was beside me crying and I couldn’t do anything except hold her hand and listen. It was frustrating and sad at the same time… Eventually I couldn’t “stay strong” and my eyes began to well up. I tried to hold as much tears in my eyes as possible before making the motion to wipe them away. I didn’t want Gabby to see but eventually she glanced at me…. I can’t think by now and I’m staring at these scribbles the cardiologist is trying to draw in front of me using words and acronyms that he thinks I’m understanding. I’ll google this later I thought (hah!). The cardiologist asked if we had any questions and I said not really at this time, just need to absorb the news. Options that were brought up were 1) termination (which Gabby promptly interrupted and said that’s not an option. They explained that they had to present the option and good that they don’t have to discuss this further) 2) A series of 3 heart surgeries and 3) heart transplant. He left and the social worker talked to us and just calmly and as “non-doctor-terminology” as possible tried to review the issue. We talked a little about the Norwood Procedure but again I wasn’t absorbing the information. I don’t know why but I started to get a little annoyed at the student being there. This person wasn’t contributing but just observing and I thought to myself, nobody really asked us if a student could be present. I really just wanted to get out of there, it was too much for one day. We would continue the talks another day. I prayed silently to myself that God please guard our hearts and minds during this time and to not let ourselves make wrong decisions during a time of high emotion.
Gabby and I left the hospital with a package under our arm about the congenital heart defect and not really saying a word about anything that just happened. We just held each other as we walked to the truck. We drove out silently and I paid the ridiculous parking bill of $12.
After picking up something quick to eat, we finally arrived home and immediately of course, I started to google. More phrases like “fatal unless life prolonging operations” or “70% success rate”, “Norwood”, “Glenn”, “Fontan” were popping up. Again, being the guy, statistics were big for me. I was confused because a lot of information was saying 70% success for the first surgery, but i was also hearing things like 85%, 90%, 95% success from Womens. I kept doing calculations in my head, “if they keep bumping the percentage by ‘5’, I wonder how many surgeries have actually been performed? It couldn’t be that many. it was a question i would surely ask in our next meeting. I also found out that as early as 20 years ago, they just started doing these “Norwood Procedures” and long term prognosis is unknown. Also, its likely the child will need a transplant later in life and that these operations are not a cure or “fix”, but life prolonging steps. The “Norwood” would happen within the first week after birth, followed by the “Glenn” at around 6 months and the “Fontan” at 2-3 years. I wondered to myself, is this an experiment? I had serious problems with this and thought to myself of the first infants that had the first operations thinking about the doctors, “oh that first operation seems to only be good for 6months, what can we do… lets do this… but thats only good for a couple years… lets add this operation….” I was getting more and more concerned this was an experiment and even wondered if my child was going to be another experiment to “further medical science”. I then had the immediate thought of, “well even if that’s the case, maybe that’s what God intends to use our child to help another child another day? Maybe he chose us because he knew the parents we would be”.
I needed to explore the options, heart transplant, Norwood+Glenn+Fontan operations, & compassionate care. i don’t know why I never really considered heart transplantation, but it just didnt seem right to me. I still don’t know why I feel that way. Perhaps its knowing of the risks of anti-rejection medication that lowers the immune system and how hard an infants body would fight to reject the foreign organ. I couldn’t shake those thoughts nor could I shake the thought of waiting for a newborn heart with a lot of other people who were on a waiting list. I couldn’t imagine ever having to face those families who didn’t receive a heart in time. The source of the hearts are usually from infants who have suffered severe head trauma. It all just bothered me inside.
With all the statistics and opinions of various heart specialists and information given, I even considered compassionate care. I really really struggled with my child being the subject of a relatively new procedure that could easily be an experiment. A couple decades ago, it seems that compassionate care was really the only option after the child was born. Compassionate Care is the term used to just make the infant comfortable for the duration of their expected life which was typically between 2hrs and a week… I wrestled with this for a number of weeks and prayed for God’s guidance and for him to reveal what he would like us to do. I thank God to this day that medical science has allowed us to pray and have others pray for us and give us the opportunity to do what’s best. For compassionate care, I could not see myself having to go through having to bury my own child! I would always remember Gabby saying to me on occasion before any of this even happened that ‘no parent should have to bury a child of theirs’. One day I bought the book online called “Waiting With Gabriel” and I read the entire book one evening in about 6 hours. For any of you that know me that well, know that I have never read a novel/book from end to end nevermind in one night! The experiences and the emotions this person was going through were exactly mine at the stage we were currently at. When I finally got to the part of her choosing compassionate care and her experience, I couldn’t place myself there. I had to do something … After a lot of prayer for God to reveal to us what we should do, Gabby and I eventually just came to a common conclusion without too much discussion and that was to proceed with the 3 operations. Gabby and I discuss quite frequently that we don’t know where we would be today if God was not in our lives. I cannot help but think that everything that has happened to me in the last 6 years was Gods plan for me. From meeting Gabby 7 years ago and debating hardly about God, the Bible and Marriage (of course you know who won 😉 Its amazing to look back and see that me debating so hard that I dug into the bible and the truth was revealed to me in a different way!), to finally arriving at Maple Ridge Alliance Church, to taking Alpha, to taking the Philippians, to getting premarital counseling, to getting married, to taking the Marriage Course, and taking it again (and will again!)… all at the same time immersing myself more and more into his Word….. Where would I be today without God? I couldn’t tell you but I have a feeling I might/could have been angry, bitter, and depressed… I give all the glory to Him for getting me to where I am today. Thank you Lord!
I know I have a lot more to share and am missing a number of other moments but I did want to get started on something. I may revisit this post from time to time adding more thoughts.
Today… We are in Edmonton, Alberta awaiting the arrival of our precious gift.
Chris,
The decision you have made is unimaginable. Your courage and faith is amazing!
We will pray for all that lies ahead and God’s peace in your lives. We will pray for the wisdom and skill of the surgeons and nurses involved and that the greatest surgeon of all, Jesus, is guiding the hands that care for your precious baby.
Prayers too that Hayden and Hayley are settling okay and adjusting to everything.
Christine
Chris
Thank you so much for sharing this experience. Your testimony of how God has and is working in your life is truly inspiring and affirms what an amazing God we worship.
You and your family are held up in prayer each day and we ask for a miracle for Baby Torrens, and for strength and peace for Gabby, Haydn, Hayley and yourself.
Your brother in Christ
Martin
Chris I am praying so for you both. The things you face will only make you stronger in the Lord. I too know the journey of which you spoke, as far as your spiritual journey goes. When you need spiritual support from your side of the family, I want you to know I will always be willing to be there for you. It has never been easy for me, being the only Christian on my side of the family. I have never had anyone I could turn to there. I want you and Gabby to know I want to be that for you any time you need me. As I read your journey I cried and had a hard time being able to see the screen.
God does have a purpose in all of this, sometimes it is and will be so hard to see and grasp. Your faith will be tested, but all we are asked to do is place our trust and HOPE in God’s hands, to be obedient to Him. Even during the times when it feels, like you have trusted as much as you possibly can, and that there just isn’t any more trust to give. Never give up. Even when things seem impossible.
I love you both, more than you can imagine, I am hurting with you, just because we are family in so many ways. I wish I could do more for you, but I know my prayers are the very best I can give you at this time. I rejoice because you are His. Love Cindy