Got HLHS? Find your Faith
Who could forget the twenty week ultrasound; when you find out what you are having...
There was no doubt in my mind from day one... I knew I was having a boy, so when the tech announced that I was right...It’s A BOY! It was more of an I told you so moment...
For parents who are expecting they walk away from this appointment with the knowledge their babies sex... However the intent of that appointment is not to find out what you’re having but to truly check on how your little one is developing.
We were told that day that the tech could not get good pictures and we would have to come back for a second ultra sound... We thought nothing else of this. Sounded normal.
A week later we were back however our experience was different- our tech was not engaging, she called in a doctor and they told us our doctor would follow up with any results... What did that mean? We were new to this so we thought normal? Possibly...
The next week, we saw our Doctor... He told us that they couldn't get a good picture of our son's heart, specifically the left side so we would need to see a specialist... "OK you have my attention" I thought... But we were told that this was somewhat standard and our Doctor was sure it was nothing!
February 11th, 2008 was the day our lives were changed forever...
We arrived at our appointment and this time we had company... My mom and my husbands Mom joined us...
The doctors preformed a fetal echo and immediately diagnosed our son.
(it is amazing how emotional I still get talking, writing about or thinking about this day. If this was a hand written note the paper would be filled with tears)
To be honest my life from that moment forward was blurry. It was like the person I used to be died, I felt robbed, and I was angry... How I moved forward was only by the grace of God. (I will get there).
This was the day we found out our son would be born with HLHS.
Devastated we sat in the room... and cried.
We talked to the doctor for what seemed like hours - here is what I can remember:
• We were told there was a possibility that I would not carry to term and our son could die before he was born
• We were given the option to terminate the pregnancy... "NOT AN OPTION" we responded
• We were told about compassionate care... Also "NOT AN OPTION"
• We were told that our son would more than likely have a series of three surgeries
• We were told that a heart transplant could be required early on or down the road
When we got home that night I stayed up for hours googling HLHS and reading anything and everything I could find on his heart defect.
My first thought was my baby wasn't going to make it home from the hospital, I thought I would lose him... I had faith but I thought this test was to much, I didn't think I would survive, I didn't think he would survive.
I have been terrified from this day forward…
Having a child diagnosed with anything life threatening while your pregnant puts a huge damper on the excitement of finishing the nursery, buying clothes for your child, everything... It took away the excitement and innocence of being pregnant.
That day was followed by many more doctors’ appointment and doctors, meetings and planning, as well as time in prayer...
Hindsight: I am thankful for this day. Many children are born with out the diagnose of HLHS. They are born and quickly become unstable. I am thankful I had time to process what was happening to all of us and to prepare for what would happen after he was born.
On June 20th, 2008 Mason Gregory Garka blessed us with his presence.
11 days later he underwent his first heart surgery.
There is nothing that can prepare you for seeing your child after a surgery of that magnitude.
I had seen hundreds of pictures of children and babies after heart surgery to prepare myself but it is not the same as seeing your own child. I was terrified walking into the CICU on my was to see Mason. I was shaking so much I didn't think my legs were going to carry me over to his bed. I had just given birth to him a short 11 days before and I had only held him twice (for short periods)… I wanted to do nothing more than to go in and rescue him, hold him, snuggle him, feed him and rock him. Instead my husband and I sat beside – holding his little hand to let him know that we were there.
Our eyes – constantly glued to the monitor.
July 4th, 2008 – Mason went back into the operating room and they closed his chest.
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His recovery from that day forward went text book well… And then he started to have seizures.
We learned shortly after his seizures began that this was a result of him suffering from two strokes. I remember this day so clearly… It was the first day that Greg went back to work and he had just left the hospital… All I could think was do not lose your composure until Greg gets back; do not lose your composure until Greg gets back…. And I didn't; but the second he walked back through the doors and I saw him it was over. I couldn't keep my composure.
The two strokes that Mason had have impacted the Right side of his Body as well as his speech. So far he has recovered from both nicely; with the help of two wonderful therapist… You the know the saying it takes a village to raise a child. This is far more true when you have a child with a CHD.
On January 12, 2009; Mason went back in to have his second surgery.
We had no major complications from this surgery – Praise the Lord.
On Tuesday, Novemember 8th, 2011 Mason had his Fontan Surgery! This was it. This was the surgery we prayed we would make it too... When we checked out of the hospital there would be NO more impending surgeries! Talk about a lot to be thankful for that Thanksgiving!
Having a child with a health condition is a true test; and it will make you or break you. Fortunately for us; it brought my husband and I closer as a couple. We do deal with things differently and I suppose that brings its challenges… I am “the crier” where my husband Greg is usually composed; rational; focused on the facts and details being presented. I hear a few words and can lose it in a moment.
If you are reading this to follow us on our journey; I Thank You. Everyone’s support and prayers have truly lifted Greg and I through some of the most difficult days.
If you are reading this because your son or daughter has just been Diagnosed with HLHS or a CHD. My advice to you is to find your faith. There is no way I could have handed my child over for surgery after surgery if I didn't trust that God was right there with him; with us. I wouldn't have been able to stand in the waiting room; knowing that his heart was not beating because it was cut open and surgery was being preformed if it wasn't for my faith.
I also don’t think I would have peace with our everyday life with Mason; This doesn't mean it is always easy, but there is hope.
Everything we have been through has been completely worth it.
My last piece of advice is to find a support group.
I urge you to register with the Linked-By-Heart database.
Linked by Heart is a partner of Sisters by Heart which allows us to connect HLHS families and support you in any way we can throughout this emotional journey.
Myself along with Susie Maxwell are your NW Linked by Heart Regional coordinators.
We have also developed a private Facebook group entitled "Linked by Heart NW Region" if you'd like to join. We would love to welcome you.
It is a closed group, by invitation only, for families in our region.
Our goal is to provide you and your family a safe and hopeful environment through a network of families who are at different stages in their HLHS journey – to share, ask questions and empower yourselves as the parent of a congenital heart defect infant/child.
You can read about Susie's daughters journey at www.babygirlmaxwell.blogspot.com
Who could forget the twenty week ultrasound; when you find out what you are having...
There was no doubt in my mind from day one... I knew I was having a boy, so when the tech announced that I was right...It’s A BOY! It was more of an I told you so moment...
For parents who are expecting they walk away from this appointment with the knowledge their babies sex... However the intent of that appointment is not to find out what you’re having but to truly check on how your little one is developing.
We were told that day that the tech could not get good pictures and we would have to come back for a second ultra sound... We thought nothing else of this. Sounded normal.
A week later we were back however our experience was different- our tech was not engaging, she called in a doctor and they told us our doctor would follow up with any results... What did that mean? We were new to this so we thought normal? Possibly...
The next week, we saw our Doctor... He told us that they couldn't get a good picture of our son's heart, specifically the left side so we would need to see a specialist... "OK you have my attention" I thought... But we were told that this was somewhat standard and our Doctor was sure it was nothing!
February 11th, 2008 was the day our lives were changed forever...
We arrived at our appointment and this time we had company... My mom and my husbands Mom joined us...
The doctors preformed a fetal echo and immediately diagnosed our son.
(it is amazing how emotional I still get talking, writing about or thinking about this day. If this was a hand written note the paper would be filled with tears)
To be honest my life from that moment forward was blurry. It was like the person I used to be died, I felt robbed, and I was angry... How I moved forward was only by the grace of God. (I will get there).
This was the day we found out our son would be born with HLHS.
Devastated we sat in the room... and cried.
We talked to the doctor for what seemed like hours - here is what I can remember:
• We were told there was a possibility that I would not carry to term and our son could die before he was born
• We were given the option to terminate the pregnancy... "NOT AN OPTION" we responded
• We were told about compassionate care... Also "NOT AN OPTION"
• We were told that our son would more than likely have a series of three surgeries
• We were told that a heart transplant could be required early on or down the road
When we got home that night I stayed up for hours googling HLHS and reading anything and everything I could find on his heart defect.
My first thought was my baby wasn't going to make it home from the hospital, I thought I would lose him... I had faith but I thought this test was to much, I didn't think I would survive, I didn't think he would survive.
I have been terrified from this day forward…
Having a child diagnosed with anything life threatening while your pregnant puts a huge damper on the excitement of finishing the nursery, buying clothes for your child, everything... It took away the excitement and innocence of being pregnant.
That day was followed by many more doctors’ appointment and doctors, meetings and planning, as well as time in prayer...
Hindsight: I am thankful for this day. Many children are born with out the diagnose of HLHS. They are born and quickly become unstable. I am thankful I had time to process what was happening to all of us and to prepare for what would happen after he was born.
On June 20th, 2008 Mason Gregory Garka blessed us with his presence.
11 days later he underwent his first heart surgery.
There is nothing that can prepare you for seeing your child after a surgery of that magnitude.
I had seen hundreds of pictures of children and babies after heart surgery to prepare myself but it is not the same as seeing your own child. I was terrified walking into the CICU on my was to see Mason. I was shaking so much I didn't think my legs were going to carry me over to his bed. I had just given birth to him a short 11 days before and I had only held him twice (for short periods)… I wanted to do nothing more than to go in and rescue him, hold him, snuggle him, feed him and rock him. Instead my husband and I sat beside – holding his little hand to let him know that we were there.
Our eyes – constantly glued to the monitor.
July 4th, 2008 – Mason went back into the operating room and they closed his chest.
His recovery from that day forward went text book well… And then he started to have seizures.
We learned shortly after his seizures began that this was a result of him suffering from two strokes. I remember this day so clearly… It was the first day that Greg went back to work and he had just left the hospital… All I could think was do not lose your composure until Greg gets back; do not lose your composure until Greg gets back…. And I didn't; but the second he walked back through the doors and I saw him it was over. I couldn't keep my composure.
The two strokes that Mason had have impacted the Right side of his Body as well as his speech. So far he has recovered from both nicely; with the help of two wonderful therapist… You the know the saying it takes a village to raise a child. This is far more true when you have a child with a CHD.
On January 12, 2009; Mason went back in to have his second surgery.
We had no major complications from this surgery – Praise the Lord.
On Tuesday, Novemember 8th, 2011 Mason had his Fontan Surgery! This was it. This was the surgery we prayed we would make it too... When we checked out of the hospital there would be NO more impending surgeries! Talk about a lot to be thankful for that Thanksgiving!
Mason recovering from his Fontan Surgery at Seattle Childrens Hospital
Having a child with a health condition is a true test; and it will make you or break you. Fortunately for us; it brought my husband and I closer as a couple. We do deal with things differently and I suppose that brings its challenges… I am “the crier” where my husband Greg is usually composed; rational; focused on the facts and details being presented. I hear a few words and can lose it in a moment.
If you are reading this to follow us on our journey; I Thank You. Everyone’s support and prayers have truly lifted Greg and I through some of the most difficult days.
If you are reading this because your son or daughter has just been Diagnosed with HLHS or a CHD. My advice to you is to find your faith. There is no way I could have handed my child over for surgery after surgery if I didn't trust that God was right there with him; with us. I wouldn't have been able to stand in the waiting room; knowing that his heart was not beating because it was cut open and surgery was being preformed if it wasn't for my faith.
I also don’t think I would have peace with our everyday life with Mason; This doesn't mean it is always easy, but there is hope.
Everything we have been through has been completely worth it.
My last piece of advice is to find a support group.
I urge you to register with the Linked-By-Heart database.
Linked by Heart is a partner of Sisters by Heart which allows us to connect HLHS families and support you in any way we can throughout this emotional journey.
Myself along with Susie Maxwell are your NW Linked by Heart Regional coordinators.
We have also developed a private Facebook group entitled "Linked by Heart NW Region" if you'd like to join. We would love to welcome you.
It is a closed group, by invitation only, for families in our region.
Our goal is to provide you and your family a safe and hopeful environment through a network of families who are at different stages in their HLHS journey – to share, ask questions and empower yourselves as the parent of a congenital heart defect infant/child.
You can read about Susie's daughters journey at www.babygirlmaxwell.blogspot.com
We strive to cultivate hope and love through our network of families and welcome you with open arms.
Mason with our HERO!!!