I am so sorry to hear your update pickles! You and your family are so strong to make that difficult decision for your son. You will be in my thoughts and prayers.
Pickles I am so sorry and know that saying that only gives so much condolences. You're one strong and selfless mom for doing what you're going to do and I wish I could give you a hug.
Me 28 DH 30 Married May 16th, 2015 EDD July 1st July16 May siggy challenge "May the Force be with you"
I'm so sorry you have to go through this. You have been and continue to be so strong and selfless and really epitomize the love of a mom for her child. I'm sending healing thoughts your way and I hope one day you feel up to coming back to us.
So sorry to hear this update. Though I also think you are SO incredibly brave for the decision you have made. And that is an understatement. Hope to hear from you again someday. Best of luck to you.
I am so very sorry for what you are going through. You are an incredibly strong and brave woman and a wonderful mama. You and your DH and baby boy will remain in our thoughts and prayers.
My heart is breaking for you. I hope time stands still for you once he is born so you can live in those moments with him forever. I'm sure he already knows he hit the jackpot, but you are an inspiring, wonderful woman and mama!
I am so sorry. I echo PP in saying that you are so brave and a wonderful and selfless mother. Take time to take care of yourself and your family. You will be in my prayers
My thoughts and prayers are with you and your family during this difficult time. You are a brave, strong woman and wish you luck as you continue your journey.
I can't imagine what you're feeling, but you and your DH and your son are in my prayers and I admire your bravery. Surround yourself with love and I hope you can find some comfort in this time. I am so sorry you have to go through this.
Married 6/1/13
BFP #1 7/2013 MMC 9/17/13
BFP #2 5/2014 MC 6/15/14
BFP #3 11/13/14 (Found in ER with ruptured cyst) Diagnosed MC 11/15/14
BFP #4 4/2015 MC 7/1/15
BFP #5 10/21/15 EDD 7/3/16 Praying for our rainbow!
I'm so sorry that you are going through this. I know I would never be able to provide any comfort, but I find you amazingly brave and kind in your hope that your son can help other families. Please take care of yourself.
I am so so sorry. I hope you and your husband can find comfort in each other and help each other stay strong through this terrible time in your lives. I hope you've got lots of real life support in addition to the amazing ladies on here. I can't imagine what you're going through and you're all in my thoughts
Cue the waterworks. Pickles my heart is breaking for you and your family. I know there is no right thing to say in this sort of situation, but please know that your bravery,strength, kindness, and grace have been apparent to us throughout all of this and it's an inspiration. Please take care of yourself. ((Hugs))
I'm so sorry. I think you are a brave mom to be thinking ahead about doing something wonderful like organ donation. A friend's 1 year old recently received a liver transplant and it was a blessing. Thoughts and prayers for you and your family.
I'm
sorry you feel this way about your son's diagnosis, @pleasesendpicklesnow, and
I know you said you got off the Bump, but I truly hope you log back on.
Where did you do your research? Have you talked to a fetal cardiologist yet? My
baby was diagnosed with HLHS with mitrial stenosis, aortic atresia and
hyploplastic aortic arch about two weeks ago. I am currently 21w4d pregnant. We
spent over two hours with the head of the fetal heart program at our local
Children's hospital and she was amazing. Yes, there is no guarantee and yes it
will be an extremely difficult road, but there are people in their 30s now
living with HLHS. These were the first generation to receive the surgeries and
many of them are thriving. It's true that any HLHSer will still need a heart
transplant at some point, but with the advances in medicine, I am hoping by the
time my baby gets to that age, there will be other options. Just look at this
amazing article from Cnet about
hearts: https://www.cnet.com/news/functional-human-hearts-regenerated-from-skin-cells/.
Science is amazing and there is so much hope.
My fetal cardiologist says there is a 90%
survival rate for the Norwood procedure and around a 100% survival for the
Glenn and Fontan procedures. Yes, I am aware that there can be other
complications, but after reading about so many HLHSers out there living life
and being so appreciative of their lives, I can't imagine not giving my
daughter that chance. If you google HLHS on Facebook, there are a couple of
girls in their 20s who have HLHS and public pages where they share their
experience. One posted a picture of her parents with her around her Norwood
procedure, and she was so thankful that her parents made the decision to have
that surgery done and give her the chance at life. Here is one page I
especially like:My HLHS Story - Meagan Broucek
This
decision is a very personal one, and I'm not trying to change your mind, but I
truly hope you've done as much research as possible, and most importantly
spoken to a good fetal cardiologist at a top notch Children's Hospital. They
have given me so much hope, and really what more can I have at this point?
Please just don't make a decision off of what you've googled. Talk to the dr,
see if there is a program at your Children's hospital that will let you talk to
an HLHS family. There is so much support out there, and this condition is so
much better than it was years ago. No matter what, it's a ridiculously tough
decision, but I hope you and your family can make the best one for you.
@kessex7 I'm sure you didn't mean your post to come across this way, but none of us are in a place to tell Pickles to reconsider her decision, in any way. While I'm sure your child's projected health outcome led you to make the decision you did, I'm sure every case is unique and others may not be facing such sure odds. If we are talking personal anecdotes, I had a friend in school with this medical issue and he lingered on the wait list for far too long and had to face the possibility of dying at 15 while waiting for a heart. At nearly 30 he's waiting on another heart. Nothing is guaranteed. I'm glad that you were able to come to a decision that works for you, and no matter how hopeful or well intentioned, your comments could cause heartbreak to a woman who had to make her own very, very difficult decision.
@kessex7 I'm sure you didn't mean your post to come across this way, but none of us are in a place to tell Pickles to reconsider her decision, in any way. While I'm sure your child's projected health outcome led you to make the decision you did, I'm sure every case is unique and others may not be facing such sure odds. If we are talking personal anecdotes, I had a friend in school with this medical issue and he lingered on the wait list for far too long and had to face the possibility of dying at 15 while waiting for a heart. At nearly 30 he's waiting on another heart. Nothing is guaranteed. I'm glad that you were able to come to a decision that works for you, and no matter how hopeful or well intentioned, your comments could cause heartbreak to a woman who had to make her own very, very difficult decision.
I am so sorry this is a decision you had to make and that it has been so incredibly hard. You are an incredible mom for making such a hard decision for your baby boy! And I am sure he will be the happiest baby and so glad for the care you can provide for him. If you ever need anything please let me know! Sending so many thoughts and prayers your way
I'm still here, still pregnant, still crazy about our little boy. Our son's diagnosis hasn't changed. Actually, it got worse: Severe HLHS with double-outlet right ventricle with mitral atresia with coarction of the aorta. He's not giving the doctors much to work with. Based on his anatomy, our pediatric cardiologist fully supports our decision to do comfort care (hospice) after he's born. We're starting to make arrangements for July with our local hospice group. If we're lucky, he'll come home from the hospital and be with us for a few days. So I'm still going to work on his nursery, make him a nice baby blanket, and try to make the most of this pregnancy. I REALLY want him to come home, meet our dogs, and live as a family with us, even if it's just for a few days.
I joined an online support group for women who are carrying to term despite a fatal or life threatening diagnosis, but it made me really uncomfortable. People kept talking about angels and posting pictures of their dead babies. I understand that they need to do that as part of their grief process, but I'm not in that place yet! So it just felt upsetting. If it's not too weird, I'd like to hang out with you all and keep talking about weird pregnancy stuff, crafts, and nurseries.
P.S. @kessex7 This is such an incredibly personal situation, and there is no one size fits all solution for every case or family. I hope you didn't mean to come across as cruel and judgey, but you sounded really condescending and made me feel like crap. Without knowing my son's case, why would you think you are qualified to tell us how we should proceed?! To answer your questions:
- No, we got this advice from a podiatrist. /sarcasm OF COURSE we saw a fetal cardiologist for this.
- I did my research on Myspace and asked my friends what to do. /sarcasm I'm a librarian; I consulted peer reviewed academic medical journals. The Society of Thoracic Surgeons journal and the Annals of Pediatric Cardiology were especially helpful. Unfortunately, they included a lot of (sad and dismal) information that my doctor didn't mention until I asked him about what the journals said.
- Your cardiologist is presenting information in an incredibly selective manner. Surgery "Survival" is calculated based on living until discharge from the hospital + 30 days. Our cardiologist says 85% survive that period after the Norwood procedure. But there are actually MORE deaths in the period between the Norwood and the Glenn procedures than in the Norwood surgery period. The interim periods are very dangerous and docs often don't include that data. Ours didn't until we saw it in an academic journal and asked about it. The truth is that just over 50% of HLHS kids make it from birth to the post-Fontan period.
And given our son's case, our doc says he's not a good candidate. So thanks for your uninformed judgement of our very personal and painful decision, but you can shove it.
@PleaseSendPicklesNow I think we would all welcome as much or as little involvement on the board as you are interested in. I can only say that I've been thinking about you a lot the past few weeks and I am so impressed by how gracefully you seem to be handling this. You are an incredible mom.
Re: A Thread For Congenital Heart Defects
Married May 16th, 2015
EDD July 1st
July16 May siggy challenge "May the Force be with you"
DD #2: EDD July 2016
I hope time stands still for you once he is born so you can live in those moments with him forever. I'm sure he already knows he hit the jackpot, but you are an inspiring, wonderful woman and mama!
I am praying for peace, love and comfort. So many hugs sweetie.
Married: October 23, 2010
DS: 8/7/2013
#2 EDD: 6/29/2016, C Section: 6/22/2016
Hugs to you and your family.
I'm sorry you feel this way about your son's diagnosis, @pleasesendpicklesnow, and I know you said you got off the Bump, but I truly hope you log back on. Where did you do your research? Have you talked to a fetal cardiologist yet? My baby was diagnosed with HLHS with mitrial stenosis, aortic atresia and hyploplastic aortic arch about two weeks ago. I am currently 21w4d pregnant. We spent over two hours with the head of the fetal heart program at our local Children's hospital and she was amazing. Yes, there is no guarantee and yes it will be an extremely difficult road, but there are people in their 30s now living with HLHS. These were the first generation to receive the surgeries and many of them are thriving. It's true that any HLHSer will still need a heart transplant at some point, but with the advances in medicine, I am hoping by the time my baby gets to that age, there will be other options. Just look at this amazing article from Cnet about hearts: https://www.cnet.com/news/functional-human-hearts-regenerated-from-skin-cells/. Science is amazing and there is so much hope.
My fetal cardiologist says there is a 90% survival rate for the Norwood procedure and around a 100% survival for the Glenn and Fontan procedures. Yes, I am aware that there can be other complications, but after reading about so many HLHSers out there living life and being so appreciative of their lives, I can't imagine not giving my daughter that chance. If you google HLHS on Facebook, there are a couple of girls in their 20s who have HLHS and public pages where they share their experience. One posted a picture of her parents with her around her Norwood procedure, and she was so thankful that her parents made the decision to have that surgery done and give her the chance at life. Here is one page I especially like: My HLHS Story - Meagan Broucek
This decision is a very personal one, and I'm not trying to change your mind, but I truly hope you've done as much research as possible, and most importantly spoken to a good fetal cardiologist at a top notch Children's Hospital. They have given me so much hope, and really what more can I have at this point? Please just don't make a decision off of what you've googled. Talk to the dr, see if there is a program at your Children's hospital that will let you talk to an HLHS family. There is so much support out there, and this condition is so much better than it was years ago. No matter what, it's a ridiculously tough decision, but I hope you and your family can make the best one for you.
Edit: words are hard and daylight savings sucks.
Married: October 23, 2010
DS: 8/7/2013
#2 EDD: 6/29/2016, C Section: 6/22/2016
is right for your son and family. (((Hugs)))
I'm still here, still pregnant, still crazy about our little boy. Our son's diagnosis hasn't changed. Actually, it got worse: Severe HLHS with double-outlet right ventricle with mitral atresia with coarction of the aorta. He's not giving the doctors much to work with. Based on his anatomy, our pediatric cardiologist fully supports our decision to do comfort care (hospice) after he's born. We're starting to make arrangements for July with our local hospice group. If we're lucky, he'll come home from the hospital and be with us for a few days. So I'm still going to work on his nursery, make him a nice baby blanket, and try to make the most of this pregnancy. I REALLY want him to come home, meet our dogs, and live as a family with us, even if it's just for a few days.
I joined an online support group for women who are carrying to term despite a fatal or life threatening diagnosis, but it made me really uncomfortable. People kept talking about angels and posting pictures of their dead babies. I understand that they need to do that as part of their grief process, but I'm not in that place yet! So it just felt upsetting. If it's not too weird, I'd like to hang out with you all and keep talking about weird pregnancy stuff, crafts, and nurseries.
P.S. @kessex7 This is such an incredibly personal situation, and there is no one size fits all solution for every case or family. I hope you didn't mean to come across as cruel and judgey, but you sounded really condescending and made me feel like crap. Without knowing my son's case, why would you think you are qualified to tell us how we should proceed?! To answer your questions:
- No, we got this advice from a podiatrist. /sarcasm OF COURSE we saw a fetal cardiologist for this.
- I did my research on Myspace and asked my friends what to do. /sarcasm I'm a librarian; I consulted peer reviewed academic medical journals. The Society of Thoracic Surgeons journal and the Annals of Pediatric Cardiology were especially helpful. Unfortunately, they included a lot of (sad and dismal) information that my doctor didn't mention until I asked him about what the journals said.
- Your cardiologist is presenting information in an incredibly selective manner. Surgery "Survival" is calculated based on living until discharge from the hospital + 30 days. Our cardiologist says 85% survive that period after the Norwood procedure. But there are actually MORE deaths in the period between the Norwood and the Glenn procedures than in the Norwood surgery period. The interim periods are very dangerous and docs often don't include that data. Ours didn't until we saw it in an academic journal and asked about it. The truth is that just over 50% of HLHS kids make it from birth to the post-Fontan period.
And given our son's case, our doc says he's not a good candidate. So thanks for your uninformed judgement of our very personal and painful decision, but you can shove it.
Edited for spelling.