Ian and I went for our routine 20 week scan on Friday 10th December 2010.
A lovely lady called Lorna scanned me and when she had finished she explained that she had a few concerns about the baby's heart and so she would like her colleague to come and have a look. So a second lady came to scan me and there seemed to be a lot of 'umm'-ing going on!
Both the ladies then left the room to discuss and Ian and I sat having a few moments. I was still smiling saying how the information I was given on the anomaly scan said that quite often 'markers' were picked up on but that more often than not the babies were fine.....
Lorna then came back in and sat down to tell us that she had seen that we were having a little girl but that she suspected that there was a serious problem with her heart. She had tears in her eyes and I understood then that it really was serious. As Lorna was the sonographer she was unable to go into detail, but our consultant Mr Lumb was paged and he arrived about 10 minutes later, along with our midwife Lesley.
We were taken in to a family room and Mr Lumb explained that Lorna suspected Hypoplastic Left Heart Syndrome, where by our little girl's heart had not developed on he left side meaning blood would not be pumped around her body and to her organs. He told us it was a very serious condition and that whilst our little baby issafe while she is in me, as soon as she was born, that's when the problems would arise.
Mr Lumb went off for a few minutes and when he came back he advised he had made an appointment for us to go for a Fetal Echocardiogram at Great Ormond Street Hospital in London on Monday 13th December. We would have a more in depth scan on the baby's heart and meet with Dr Sullivan who would be able to explain to us in greater detail our options and how the condition can be managed. We understood that the heart is not able to be fixed to be like a normal heart but that there was a chance that using the building blocks of what was there, a circulation system may be built. Mr Lumb explained that most couples in our situation chose to terminate.
We found it hard to think of any questions to ask at that point in time, so once we had all our appointment details for GOSH and a follow up appointment with Mr Lumb off we went in a state of shock.
Hi Dana, I'm so glad you found my blog. I'm sorry to hear about your daughters diagnosis. I know how scary that is. But I am here to tell you that there is plenty of HOPE for your daughter!! My daughter, Aly, is 17 months and is thriving living with HLHS. And we are not alone. There are thousands of children (and adults) who have had successful surgeries to be able to lead a normal life with a hypoplastic heart. Please feel free to poke around my blog and look in the lower left hand corner where I have links to many many many other heart families.
ReplyDeleteI'm here if you have any questions or I can help in any way!
Dana,
ReplyDeleteJenny is right, there is HOPE for your little princess. Yes, some families choose to terminate but that is not the only option. Our little girl, Zoe, is 7 months and has undergone 2 out of the 3 required surgeries. She is doing very well and smiles and laughs constantly. Feel free to visit our blog. Your post really hit home with me, as we were diagnosed on December 9, 2009, just a year and one day before you received your devastating news. Please check out my latest blog and see how far we've come in a year! www.thelihns.blogspot.com
Hi Dana - we got the news about Jordan's HLHS on June 2, 2010. He was born October 1. He had his first surgery on October 6th and a second emergency surgery on October 26th. No one ever suggested that we terminate the pregnancy. We stare out our little miracle daily and still know that he is so fragile. He is scheduled for the next surgery in February 2011.
ReplyDeleteWe try to focus on the positive and we have prayed our hearts out with all of our family and friends. They told us the bigger the baby was and the longer she carried him the better. So...we(I gained more weight than she did) ate and ate and she rested and did everything the doctors advised. She carried him almost 39 weeks and he weighed 7lbs 11 oz. He weighed 10 pounds 7 oz yesterday!
Take care of yourself and research everything. There are lots of resources and lots of Heart Moms out there that will help you with your questions.
see our blog at http://jordankleckley.blogspot.com
wendy, rhonda & jordan
The ladies are right...there is a lot of hope and the future for our little ones is brighter every day. The new medical technology and treatments just in the last 20 years give me tons of hope for my daughters' future.
ReplyDeleteI can totally relate to your appointments and probably a lot of the emotions that are flooding through you right now. I blogged about them a lot in May through September of 2009 and if you want, feel free to check out my blog. We were told all of our options and even considered termination, but decided against that as an option.
Our journey has been filled with many emotions, but I try to focus on the positive. Hope may be small, but she is mighty and has been through more in her 15 months than most people have in their lifetime!
Hello!! I am a mother of five - my fourth child Townsend has HLHS. He just turned 2 and has completed all three of the surgeries at Children's Hospital Los Angeles. My son was not pre-diagnosed so we were unable to gather information about HLHS prior to his birth but I hope I can be a resource for you as well as all the other AMAZING HLHS mothers, parents, and families!
ReplyDeletewww.caringbridge.org/visit/townsendhale
God Bless,
Sara Hale
Dana,
ReplyDeleteI too remember hearing the news of Jacob's heart like it was yesterday. We found out November 18th, 2009. I felt so hopeless and lost. I loved my baby but was not given much hope at first. Then I researched and learned how much hope there really was. Jacob also had a restricted septum so his risk was even higher. He had a rough first few months but I am happy to report that he is now a happy (almost 9 month old) baby who is developing like any other baby his age.
There is so much hope. I am here if you have any questions. I started a blog for Jake at the time of my diagnosis as well. You can see Jacob's Journey at www.jacobsspecialheart.blogspot.com
Email me anytime: thebakertrio@gmail.com
Hi, Dana! I have to agree with all of my fellow heart mom friends who are telling you there is HOPE for your sweet Emily! Our son Chase was diagnosed at 20 weeks with HLHS and is now 14 months old! He was in the hospital for 4 weeks after his Norwood in Nov. '09 and ONE week following his Glenn in Mar. '10. I have to tell you, we've had his surgeries completed at MUSC in Charleston, South Carolina. The surgeon who did Chase's Norwood was Dr. T-Y Hsia, and we LOVED him! He left MUSC a few months after Chase was born and went to: Great Ormond Street Hospital in London!!! He is an AMAZING surgeon and so very personable and down-to-earth. If you have the opportunity to work with him, you will be blessed!
ReplyDeletePlease hold on to the truth that these sweet HLHS babies THRIVE and live happy, full lives! You and your family will be in my thoughts and prayers throughout your journey. Please feel free to contact me if you have any questions!
((Heart Hugs!))
Kathy
Hi Dana!
ReplyDeleteOur son Samson is almost 5, HLHS, doing great! He's had all 3 surgeries (and another one for something really, really rare). He's in pre-K - runs, plays Legos, loves Star Wars, reading books and aside from a heart that works differently, is otherwise a typical little boy. His story is at http://www.babysamson.com - feel free to email any questions or just to touch base with someone who's been there (though it looks like a bunch of us heart-mamas pounced on this post, and I imagine there will be more to come!).
You are SO not alone in this journey.
Sending love and thoughts of peace and calm to you both!
Hello,
ReplyDeleteYou are exactly where my husband and I were only 2 months ago exactly. We found out our baby boy has HLHS on October 16, 2010. It was just as you described it, so overwhelming and so much terrible information at once that you feel completely lost and alone. As you saw all the posts on your page, you are not alone there are plenty of babies with this condition and are doing well. We were given 3 options, terminate, compassionate care, or surgeries. With all the negative things the doctors were saying we really considered termination, however I could not bring myself to make that decision for my baby so I turned to the internet to find other people in this situation and as much information as I could. Turns out that this is one of the most serious CHD's however chances are in your favor right now and as medicine progresses i'm sure it will get better. I'm getting strength from a lot of online communities and Facebook groups and it proves that there is HOPE. There is so much HOPE for these children, from what their mothers write on blogs and posts, they are real warriors and that half of a heart fills the parent's hearts with soo much love that even on good day posts it's hard not to shed a tear of joy for these little kids .. So I got rambling, but stay strong and focused and you'll know what to do.
As my doctors told me, any decision that you make will be the right one for your family and that's all that matters.
Good Luck! you can contact me if you have any questions. I alo have a FB friend with a little boy with HLHS in London.
Kathy K
Hi Dana!
ReplyDeleteOur daughter Abby has HLHS and will turn 4 on Monday. She completed her third surgery this past spring and is a crazy, hyper preschooler that you would never guess has been through 3 open heart surgeries.
I am so happy that so many heart moms have found your blog and are able to share their stories of hope. I remember learning about Abby's HLHS and all the emotions that came with it like it was yesterday. It' been a roller coaster over the past 4 years, but I can't imagine life without her.
You can check out Abby's story if you want at http://babyabbysheart.blogspot.com and feel free to contact me anytime if you want to talk. Like Erika said, you are SO not alone!
Take care and we'll be sending lots of prayers and good thoughts your way.
-Alison
Hi Dana! First congratulations on your baby to be! Secondly, as all have mentioned above there is a lot of hope for children born with congenital heart defects. My son does not have HLHS but he has five other very complex heart defects and has endured three heart surgeries so far. He is doing really well!
ReplyDeleteIt is definitely a journey full of ups and downs but there is so much joy that comes with it. These kids are miracles and such an amazing blessing!
I'll keep tabs on your page and say many prayers!!!
Ditto on the Congratulations and ditto to everything said above. I'm sorry to meet you here - I know that shock - I wish it on no one - but do know, these kids (like mine) with CHD's are their own people, with their own story to tell - and I have been stunned since that first day - and much of it is "good stunned" - in seeing what these "heart warriors" can do. My little one had surgery at two days old - she pulled through with flying colors (other things happened later later on not at all related to the heart...) but not a day goes by that I don't think of her surgeon and what he did for my little girl and every moment he gave me with her - how well she did after such complex surgery (Truncus Arterious type 1 with double valve replacements). It is never an okay place to be here- it is not okay- no ones child should be given this situation - but please know - I have seen and am honored to know so many CHD warriors! You will be in my prayers for sure.
ReplyDeleteThank you all for your kind comments. I'm trying to find time to look at all your blogs as they really do provide so much hope! I'm honoured you have all taken time to comment.
ReplyDeleteIt's good to know that near and far there are people I can turn to for advice of just to speak to, to now that what I am feeling is okay.
Well, about to do a new update on whats happened this week and then to check out some of your stories :-) xx
Congratulations on your little girl! This is a crazy ride, but the moment you lay eyes on her it will be worth it!!!!!! You are now a member of a fantastic group of people (that none of us wish we were a part of) and you will get so much support!!! If you have any questions, please let me know. Emily Rose is a beautiful name!Hugs!
ReplyDelete