Another lurker coming out of hiding with a HLHS diagnosis.

Laura20000mi · November 2014

Hello all,

My husband and I are finally pregnant with our little boy Luke (due 2/19) after years of trying and a successful IVF attempt. At our 22 week anatomy scan we were told there was some things they wanted to double check with a MFM specialist, but not to worry. Yesterday we met with the MFM for a second ultrasound, and received the diagnosis of hypoplastic left heart syndrome (HLHS), basically the left side of his heart is severely underdeveloped and will not function once he is born and he will need open heart surgery a few days after birth. We now are waiting on an appointment (hopefully later this week) to meet with a team of specialists at Mott Children's Hospital in Ann Arbor, MI. It's been a rough time, trying to stay positive, but now I have mixed feelings about all the normal "happy" pregnancy things (getting nursery ready, baby shower, etc.). Lots of tears and uncertainty, but we will get through, one day at a time. Thanks for listening.

wintersong139 · November 2014

Welcome to the board, Laura. I know this must be super scary for you! I'm so grateful that we live in a time when problems like this can be detected in utero so that doctors can prepare a plan ahead of time to help your baby Luke grow up strong and healthy.

erobbins09 · November 2014

Welcome to F15! I'm so sorry to hear about the complications you are experiencing... I have no advice just my thoughts and support for all you are going through. Best of luck to you and Luke (I love that name!) and please keep us posted as you learn more.

junebugjam · November 2014

Thoughts and prayers to you and your sweet baby boy. I have been there, and you should know that what you're feeling is totally normal. Even now, on a second pregnancy, I don't feel comfortable enough to be excited about the happy things. A diagnosis like that changes you, but hopefully you have a great team of doctors who will do everything they can to help your little boy.

CatLadyTX · November 2014

Welcome to F15! I'm sorry to hear that your son has complications, but I'm glad that the doctors are able to do an early surgery for him, I cannot imagine how scary this is for you. Please stick around, you will have a great support system in this group.

jmcgra06 · November 2014

Thinking of you! Hoping you get great news in the coming weeks - please keep us posted!

ems0523 · November 2014

Welcome Laura, we have a friend who had a little boy in July with similar issues and they also went to Mott in Ann Arbor. He is doing very well now and goes for his next surgery in December. FX you are able to get in there and have success with their surgeons as well.

misskc2 · November 2014

Welcome to F15. I have a few friends who went to Motts in Ann Arbor and I heard nothing but good things so I think you are in good hands!!! I know it is super hard to focus on the positive right now. But you won't love your LO any less with this diagnosis. He will be a fighter for sure and it will help make him stronger!!! Being a teacher of students with special needs I see a lot if kiddos who had to fight to live their first few days and months. They are usually the most special. Don't gets wrong, I am def not saying your kiddo will end up with a disability just trying to give you hope that even if he does, he can go on to do great things!!!! We are all here for you.

elephantsonpatrol · November 2014

Welcome to F15 - and thoughts and prayers to you!

yesiknowwhatcausesthat · November 2014

Thoughts and prayers for you! It is a long, hard road ahead, but not without hope!! I have a friend whose son was born with this a few years ago now. She kept a blog that documented their journey, if you want to read: https://gonzalezsheart.blogspot.com/

mishka29 · November 2014

Welcome! I'm sorry you are faced with this difficult situation. I know someone else has posted about this, maybe last month, hopefully they will comment. I'm glad you are getting set up with the care your LO will need!

Irishcurls · November 2014

Welcome! I'm glad you have a plan and it sounds like you and Luke will be in wonderful care. We're here if you need us!

umbcpt · November 2014

I work with children birth to 3, and currently our office (one of which is in my caseload) have 6 children with this diagnosis! Happy to report they are all doing well. They have a tough road, for sure, but a road that is full of hope!

My friends son just turned 6, and he plays travel hockey and is just like any other typical boy! His HPLH is there, but he's doing well!!!

Thinking of you and keeping you and your baby in my prayers!

Welcome to F15!

wirtlehm · November 2014

Lots of T&Ps and TONS of hugs for you and DH...

lizjennings81 · November 2014

Welcome! I know this must be a scary time, but I can say a couple of things:

First of all, you and Luke are in great hands with Mott. They took wonderful care of me when I was a seriously ill toddler (different condition). U-M is pretty skilled in this particular surgery, I've heard.

Second, many, many children born with congenital heart disease now thrive after their treatments and surgeries. It won't be an easy road, but you have reason to hope.

Keeping you and Luke in my thoughts. Glad you've joined F15.

MaddScientist · November 2014

Welcome. I know this diagnosis is very scary. But, there have been great advances in the science and surgery in treating these children in the last 25 years or so and the initial survival is much better (the focus has switched from keeping them alive as infants to long-term care as adolescents). I'm sure you will get a lot more information about what you can expect when you meet with your specialist team.

However, one thing I think you need to be aware of (that they probably won't discuss with you unprompted) is that mortality statistics and the prognosis of children undergoing surgery to correct HLHS (especially if there are other complicating morphologies - eg. small ascending aorta, misaligned coronaries, etc.) vary GREATLY <-- cannot stress this enough GREATLY between centers and surgeons. Classically, children's in boston and philadelphia are considered the best pediatric heart surgery centers. In the late 90s- early 2000s I know Cleveland clinic was one of the best in the world with Roger Mee being one of the greatest surgeons (although he has retired now).

I think it is definitely worth you doing research on Ann Arbor M statistics on this type of surgery and the surgeons who you will be seeing - make sure when they quote you statistics it is their personal statistics and you specifically ask them who is the best for HLHS surgery or look into if it would be possible to transfer to a better center if they are not up to par.

There is a book I like that is not super technical about Cleveland Clinic and Roger Mee - and pediatric heart surgery and HLHS in general that highlights some of these issues Walk on Water

Anyway, if you need any other info, while I haven't gone through this personally it is a special interest in my research so feel free to PM me.

Good luck.

triplej9 · November 2014

Welcome to F'15 and thank you for sharing.

I will be keeping you in my T&P's.

actres · November 2014

I will be praying for you, Baby Luke and your family.

FlowerPower16 · November 2014

I am so sorry for your son's diagnosis. I know how scary it is. I've been there. It is a life-changing diagnosis. Our daughter, Claire, was diagnosed with HLHS at our 20-week ultrasound. She unfortunately did not make it, but there are so many kids who are thriving and doing well after the surgeries. I pray that Luke is one of them.

What @MaddScientist said is 100% the truth. Do your research on centers and surgeons. CHOP and Boston are the best in the country as far as HLHS surgeons and success rates.

If you need anyone to talk to or have any questions, please feel free to PM me. I'm happy to talk about our experience.

chicagojackie · November 2014

Hi Laura,

Mott in Ann Arbor is a wonderful resource. Your son will receive state of the art care.

Anyway I am so sorry to hear that you have to deal with this. It is okay to grieve and feel upset. Give yourself space and leeway to work through it. We are here for you! So many hugs to you.

Love from Chicago!
Jackie

Laura20000mi · November 2014

Thank you everyone for your kind words of support and sharing resources with us. It is comforting hearing from other people and their friends who have gone through this. We will definitely do our research and know our options to make the best choices for Luke. Our appointment at Mott is this Friday so hopefully we will have more information then.

xooemilyrose · November 2014

Hi Laura! I'm so sorry your son has been diagnosed with HLHS.

I have posted on here last month after my son (EDD 2/27) was diagnosed with HRHS/Tricuspid Atresia at his anatomy scan at 20w 4days. After the initial diagnoses I was absolutely devastated and practically felt like I didn't even know why id decorate a nursery, buy a crib, look at baby clothes, etc. the doctor pretty much told me id be better off terminating the pregnancy.

I hopelessly made an appointment at Children's Hospital of Philadelphia and I worked myself up so bad before even going. Just the atmosphere changed my whole thought process of his diagnosis. DO NOT BELIEVE GOOGLE. Late at night I would go look on there. Bad, bad, bad idea. The fetal cardiologist gave me so much hope and these specialists are amazing at what they do.

I was extremely depressed while waiting for the doctors appointments, and since then I've changed my attitude around like a 180. I'm not saying it's going to be easy, but just listening to others stories has helped me so much. It's not exactly the life I would like for my baby, but it's still a beautiful one. Please don't hesitate to message me.. It's a very unique birth defect that is still pretty much unexplainable in most cases. I'll pray for you and your son every time I pray for mine.

Idk if you believe in God, but I was told "God only gives broken hearts to those with big enough hearts to fix them." Maybe it's corny, but it was nice to hear. I wish you the best and please don't hesitate if you want a bump buddy going through a similar situation.

Emily

twinklymama · November 2014

Welcome! That's hard news to digest, but sounds like you are in pretty good hands. Thoughts and prayers headed your way!

alyse0305 · November 2014

Welcome to F15 officially! We too were given news at our U/S that sent us to MFM- baby has a cleft. Although what we are dealing with is not nearly as scary as your scenario I can understand what you must be feeling. Meeting with the surgeons prior is the best thing you can do for baby. I also would recommend- as my uncle is an anesthesiologist and called for me- contacting the anesthesia department at the children's hospital and getting a good recommendation for the Doctor that will be tending to the baby during during as far as sedating. Also, make sure you get two so you can have a back up in case the other anesthesiologist is away for any reason. You can request one or the other in the days leading up to the surgery. It's not something we all think about when in the process of planning, but is crucial in making sure everything run smoothly. Feel free to reach out to me if you need help with this and I can attempt to get you in contact with, or find names for you. Best to you and the LO.

Paleomama · November 2014

Welcome!! I'm am sorry. I will be sending T&P to your little man.

CogDis · November 2014

I'm so sorry to hear that you are having to endure this. I'll be sending well wishes and healing thoughts to you and your baby, Luke. Please come back to let us know how the appointment goes on Friday.

Jensoprano82 · November 2014

Welcome to the board, T&P to you and your little boy. This group is really supportive so hopefully that helps when you're feeling down. Thank goodness the problem was diagnosed before birth and you will be in very capable hands.

boymom10 · November 2014

I'm a lurker, due in February with baby #3, but I'm also a heart momma. My second son was born with a major heart defect as well, and has now had two open heart surgeries. It's been a tough road, but he is strong and doing amazing at 21 months old. Heart babies are tough, and I know Luke will amaze you through it all. Hang in there, Momma. I'll be praying for you and your sweet boy.

tammynixx · November 2014

Welcome to the board! I'm praying for your little boy and hoping for an easy surgery for him.

mytinc · January 2015

Sorry to randomly revive an old thread, but I occasionally search the bump for HLHS and this thread popped up. I received the same diagnosis while pregnant with our second son. He additionally has double outlet right ventricle (DORV). He was born this past September and had his first surgery at 5 days old. He is schedule for his second surgery next month. If you ever need to talk, please feel free to pm me. I know I had a hard time finding support on the bump when I first found out. And the closer to birth it got the scarier it became.

Hugs!

kerrigrooves · January 2015

Im so sorry you're going through this. Im keeping you and Luke in my T&Ps...

pixelatedjane · January 2015

Thoughts and prayers to you and your family!

Lrjjj08 · January 2015

Thoughts and prayers for you and the baby!

Laura20000mi · January 2015

Thanks everyone, sorry to post and then re-lurk. We have been visiting Mott Children's hospital for repeat echos every two-four weeks, and I just found out they are going to induce me on Sun, Feb 8. They told us to plan for about a 1 month ICU stay. We are in much better spirits than when I originally posted. We still don't know what the future holds for Luke but are optimistic! Oh, and my baby shower is today, so that is exciting.

chicagojackie · January 2015

Hugs to you, Laura and to all the HLHS moms. Find the other heart and NICU moms and they will keep you sane. You will also be surprised to find RN's and MD's at the hospital who have children with chronic diseases and they often know of get-togethers or support groups that you may like too.

Want a personalized experience?

Another lurker coming out of hiding with a HLHS diagnosis.

Re: Another lurker coming out of hiding with a HLHS diagnosis.

Choose Another Board

Search Boards