Hannah's Story
From Beth (Hannah's mommy) - posted on March 1, 2013
On February 14, 2013, a day meant to share and express love, I found out that your little heart is broken and that broke mine. I knew in that moment life would never be the same. Just one short week earlier I had learned that you were a girl and I was filled with joy and excitement about your future and our future together. That all changed when I learned that the future I had envisioned may turn into a very different reality.
The Doctor's explained that you have a very rare heart condition, Hypo Plastic Left Heart Syndrome, that causes the left side of your heart to not function. Ironically, you are safer inside your momma then out in the world as I am doing most of the work for you while you are tucked away in your own private pool. I have asked some very tough questions about what your future will hold, but no one can give me an clear answers. What I know to be true is that I need to cherish every day I have with you.
I don't know if we will get to know each other over the years or if our time together will be brief. I don't know if I will get to see you smile or hear you laugh, watch you take your first steps, or show you all of the amazing things this world has to offer. I believe that your future is not in my hands and that only time will reveal what is now unknown. However, there are a few things I can promise you: you are loved and cherished by so many and your name is offered up to God on a daily basis in gratitude and hope. Your life, whatever it may be, has meaning beyond what you can even imagine, and even though your heart is broken, to me, you are perfect and always will be. Our journey together will be a special one, one that I will never forget.
Update as of January 1, 2015
Little Hannah Grace is a vibrant 18 month old that loves Frozen, eating, and her sister "addie ri". Their familyh left for vacation following Christmas for their annual week at the beach in Bethany, Delaware. She woke up Sunday and and ate a normal breakfast but following her morning nap they knew something was wrong. They contacted her cardiologist at UVA and were instructed to bring her to DuPont Children's Hospital, which is where we are now.
Hannah's health has declined very quickly and they were admitted to the cardiac intensive care unit. It was discovered that she had a large clot blocking flow from the coronary arteries to the heart. What resulted was damage to the heart similar to an adult having a heart attack. She was put on a breathing tube and sedated and the hospital worked out a plan to treat it. It is the largest clot they have seen in a child her size and a very rare side effect from her congenital heart defect. They worked out a plan to try and shrink the clot by placing a catheter and dropping the medication directly on to the clot. It appeared to be working and for the first time in 24 hours we had a small piece of hope.
That following night, Hannah went into cardiac arrest. They performed CPR for 55 minutes and placed her on a heart and lung bypass machine (ECMO) which now remains. That is doing all of the work of her heart and lungs and allowing her body to rest. She is very sick and her heart is damaged beyond repair. She will not leave the hospital without a transplant. They are waiting to see if there was any brain damage from the extensive CPR; right now they feel she is showing signs of activity and that perhaps there was not permanent damage done.
Hannah has been stable on ECMO since early Tuesday morning. There have been small improvements in organ function everyday with no major changes and for that I'm thankful. When we started this journey our focus was getting her stable to get her home to Virginia. On Tuesday, Hannah's mommy had a very hard conversation with her cardiologist at UVA that changed the course and further showed their family God's hand in all of this. He stated clearly that UVA is not equipped to handle the level of care that Hannah requires and that she is where she needs to be. He was humble and honest and the although he didn't say it, we are not sure that Hannah would still be with us had we been in Virginia. There is a reason this happened the day after we left Virginia and there is a reason we are now at Dupont Children's Hospital. That is not because UVA isn't a top notch facility but what Hannah now requires is relatively new for single ventricle children and UVA doesn't do it at this time.
Little Hannah needs a "Berlin Heart". This is her only chance at getting her stable and in a place where she can wait for a heart transplant. The Berlin Heart is a tiny heart pump that maintains blood flow in babies and small children with serious heart failure. To date, the Berlin Heart has been used in approximately 1,000 children worldwide and is the only device of its kind available for babies and children with severe heart failure.
The Berlin Heart been used in 1,000 children. Unfortunately, it has only been used in 12 children that have single ventricles. DuPont has never put one in a single ventricle baby, Hannah will be their first. Out of those 12, 7 of them made it to transplant. We are scheduled to have that surgery tomorrow at 12. There are a lot of risks associated with moving forward with this plan and even more because Hannah has a single ventricle but it is the only choice that we have. I have fallen in love with her surgeon and her team and feel even more when I'm with them that we are where we are supposed to be.
In addition to having that procedure tomorrow, she was officially put on the transplant list today. Normally they would not put her on the list until they had properly assessed her brain function. They can not do this until they wake her up and they can't wake her up until the Berlin Heart is in place. So they have listed her but will not accept a heart should one become available until they have completed that assessment and some other test results have come in. At her age that list is all about time accrued and they wanted to start the clock as soon as they could. The average wait time for a transplant is 4-6 months. If you have an O blood type it's longer; Hannah is an O! Realistically there is no way to predict with all of the factors that make a good "match" how long it will take. There is no way to predict if the Berlin Heart will work for her. There really is no way of knowing what the future holds and therefor I'm desperately trying to take it one hour at a time. I asked the transplant team at what point in this process can I take a breath and their response was "discharge". That means that I am now in Delaware indefinitely. I'm staying at the Ronald McDonald House and will remain here. I am going to take a leave of absence from work for and take things one day at a time.
So today I decided to brighten up Hannah's room. I sent Uncle Ian to Walgreens to print a bunch of pictures and then we made posters and pictures and paper chains and we "pimped out" Hannah's room. Tomorrow is the first of many big days for her and although she is sedated and unaware I have to believe that she knows what we did for her today. Maybe when she briefly opens her eyes she will catch a glimpse of of her sister or her mama or a picture of one of the many people that love her. Maybe she'll see the paper chain and think she's at a party. Maybe this medical team that is responsible for her care that hasn't had the opportunity to know her will be able to see in the pictures how loved she is, how bright she is, how strong she is. If nothing else, for a few hours today it allowed me to focus on my Hannah and all that she means to me and not on statistics and chances and procedures and for that I am thankful.
The cardiac team here has been fabulous and I feel she is receiving the best care we could ask for. She is in need of your prayers and positive thinking; myself and my family could use it too. She is a fighter and she is strong and right now we fight with her and we hope.
Tomorrow is Game day: Clear Eyes, Full Hearts, Can't Lose....
On February 14, 2013, a day meant to share and express love, I found out that your little heart is broken and that broke mine. I knew in that moment life would never be the same. Just one short week earlier I had learned that you were a girl and I was filled with joy and excitement about your future and our future together. That all changed when I learned that the future I had envisioned may turn into a very different reality.
The Doctor's explained that you have a very rare heart condition, Hypo Plastic Left Heart Syndrome, that causes the left side of your heart to not function. Ironically, you are safer inside your momma then out in the world as I am doing most of the work for you while you are tucked away in your own private pool. I have asked some very tough questions about what your future will hold, but no one can give me an clear answers. What I know to be true is that I need to cherish every day I have with you.
I don't know if we will get to know each other over the years or if our time together will be brief. I don't know if I will get to see you smile or hear you laugh, watch you take your first steps, or show you all of the amazing things this world has to offer. I believe that your future is not in my hands and that only time will reveal what is now unknown. However, there are a few things I can promise you: you are loved and cherished by so many and your name is offered up to God on a daily basis in gratitude and hope. Your life, whatever it may be, has meaning beyond what you can even imagine, and even though your heart is broken, to me, you are perfect and always will be. Our journey together will be a special one, one that I will never forget.
Update as of January 1, 2015
Little Hannah Grace is a vibrant 18 month old that loves Frozen, eating, and her sister "addie ri". Their familyh left for vacation following Christmas for their annual week at the beach in Bethany, Delaware. She woke up Sunday and and ate a normal breakfast but following her morning nap they knew something was wrong. They contacted her cardiologist at UVA and were instructed to bring her to DuPont Children's Hospital, which is where we are now.
Hannah's health has declined very quickly and they were admitted to the cardiac intensive care unit. It was discovered that she had a large clot blocking flow from the coronary arteries to the heart. What resulted was damage to the heart similar to an adult having a heart attack. She was put on a breathing tube and sedated and the hospital worked out a plan to treat it. It is the largest clot they have seen in a child her size and a very rare side effect from her congenital heart defect. They worked out a plan to try and shrink the clot by placing a catheter and dropping the medication directly on to the clot. It appeared to be working and for the first time in 24 hours we had a small piece of hope.
That following night, Hannah went into cardiac arrest. They performed CPR for 55 minutes and placed her on a heart and lung bypass machine (ECMO) which now remains. That is doing all of the work of her heart and lungs and allowing her body to rest. She is very sick and her heart is damaged beyond repair. She will not leave the hospital without a transplant. They are waiting to see if there was any brain damage from the extensive CPR; right now they feel she is showing signs of activity and that perhaps there was not permanent damage done.
Hannah has been stable on ECMO since early Tuesday morning. There have been small improvements in organ function everyday with no major changes and for that I'm thankful. When we started this journey our focus was getting her stable to get her home to Virginia. On Tuesday, Hannah's mommy had a very hard conversation with her cardiologist at UVA that changed the course and further showed their family God's hand in all of this. He stated clearly that UVA is not equipped to handle the level of care that Hannah requires and that she is where she needs to be. He was humble and honest and the although he didn't say it, we are not sure that Hannah would still be with us had we been in Virginia. There is a reason this happened the day after we left Virginia and there is a reason we are now at Dupont Children's Hospital. That is not because UVA isn't a top notch facility but what Hannah now requires is relatively new for single ventricle children and UVA doesn't do it at this time.
Little Hannah needs a "Berlin Heart". This is her only chance at getting her stable and in a place where she can wait for a heart transplant. The Berlin Heart is a tiny heart pump that maintains blood flow in babies and small children with serious heart failure. To date, the Berlin Heart has been used in approximately 1,000 children worldwide and is the only device of its kind available for babies and children with severe heart failure.
The Berlin Heart been used in 1,000 children. Unfortunately, it has only been used in 12 children that have single ventricles. DuPont has never put one in a single ventricle baby, Hannah will be their first. Out of those 12, 7 of them made it to transplant. We are scheduled to have that surgery tomorrow at 12. There are a lot of risks associated with moving forward with this plan and even more because Hannah has a single ventricle but it is the only choice that we have. I have fallen in love with her surgeon and her team and feel even more when I'm with them that we are where we are supposed to be.
In addition to having that procedure tomorrow, she was officially put on the transplant list today. Normally they would not put her on the list until they had properly assessed her brain function. They can not do this until they wake her up and they can't wake her up until the Berlin Heart is in place. So they have listed her but will not accept a heart should one become available until they have completed that assessment and some other test results have come in. At her age that list is all about time accrued and they wanted to start the clock as soon as they could. The average wait time for a transplant is 4-6 months. If you have an O blood type it's longer; Hannah is an O! Realistically there is no way to predict with all of the factors that make a good "match" how long it will take. There is no way to predict if the Berlin Heart will work for her. There really is no way of knowing what the future holds and therefor I'm desperately trying to take it one hour at a time. I asked the transplant team at what point in this process can I take a breath and their response was "discharge". That means that I am now in Delaware indefinitely. I'm staying at the Ronald McDonald House and will remain here. I am going to take a leave of absence from work for and take things one day at a time.
So today I decided to brighten up Hannah's room. I sent Uncle Ian to Walgreens to print a bunch of pictures and then we made posters and pictures and paper chains and we "pimped out" Hannah's room. Tomorrow is the first of many big days for her and although she is sedated and unaware I have to believe that she knows what we did for her today. Maybe when she briefly opens her eyes she will catch a glimpse of of her sister or her mama or a picture of one of the many people that love her. Maybe she'll see the paper chain and think she's at a party. Maybe this medical team that is responsible for her care that hasn't had the opportunity to know her will be able to see in the pictures how loved she is, how bright she is, how strong she is. If nothing else, for a few hours today it allowed me to focus on my Hannah and all that she means to me and not on statistics and chances and procedures and for that I am thankful.
The cardiac team here has been fabulous and I feel she is receiving the best care we could ask for. She is in need of your prayers and positive thinking; myself and my family could use it too. She is a fighter and she is strong and right now we fight with her and we hope.
Tomorrow is Game day: Clear Eyes, Full Hearts, Can't Lose....