hypoplastic left heart

sparkles80 · December 2014

I'm 20 weeks and 5 days and I went to get an altrasound done and found out that my baby has hypoplastic left heart. They told me I have a week to decide what I was going to do. Sad and confused I don't know what to do. Any one with experience?

hillbillywife · December 2014

I'm not sure what that is but I'm sorry you have to make hard decisions.

bowman958 · December 2014

I do not have personal experience, but I have a friend whose two month old has HLHS. There is a Facebook based support group that has been helpful to her. It is not a death sentence, there is a three-step surgery process that helps correct the heart defect, and most kids can go on to live fairly normally, though they will not be world class athletes. I don't know where you live but some of the best doctors for HLHS are at Nationwide Children's Hospital in Columbus, OH.

jc_twomamas · December 2014

I have worked with quite a few infants and toddlers with HLHS and HRHS. I am so sorry that you are going through this. I'm not sure what you mean by options either as technology has made the three surgeries very successful. Do LOTS of research and be sure to get hooked up with a good children's hospital near you. University of Michigan has some of the best pediatric cardiologists and a fantastic facility. Find a support group and ask some other mommys about their experiences. I'm sure you will find a lot of support in them. Good luck and keep us posted.

Sharon&Paul · December 2014

My friend deleveried a daughter with this condition. However, she also had Wolf Hirschsprung Disease. They were advised to terminate and that their duaghter would not survive L&D. They decided to get a second opinion at CHOP. Not only did she survive delivery, but she lived to 16 amazing months. In the end it was a seizure from her Wolf Hirchsprung condition to overcame her. Her heart was still strong. She went through three heart surgeries. Ultimately she would have needed a transplant.

I would recommend getting a second opinion and maybe a third. Good Luck and prayers for your little one.

springlove59 · December 2014

My younger sister had this, there is a lot that they can do for it now, although when she was born ('88) there wasn't that much...they didnt even know she had it. They sent my parents home with her. I'm glad that they have found out early and hope for the best possible outcome for your LO. Definitely talk to some good doctors about what the best course of action is. T&P for you and your family.

Jlotterman · December 2014

I have worked with a fair amount of babies and children with HLHS. Like with any problem, the outcomes vary. They need three open heart surgeries and will ultimately need a heart transplant. There are some that do relatively well and some that don't. I personally had a friend that is also a pediatric physician go through this and she ultimately decided not to continue on with the pregnancy. She also got a second opinion from CHOP. I suggest doing a lot of research and getting a second opinion. You have to do what is right for you and your family. I am so sorry that you are going through this. You are in my thoughts.

sparkles80 · December 2014

Yes that's what I'm talking about. My baby girl has hplh, cpc, and bilateral pyelectasis.

sparkles80 · December 2014

I will be seeing a third doctor really soon. Just waiting in then to call me with the appointment. At that time they will be able to give me better information and opinions on the outcome. All I really know is it is not so good for now. I have 4 other children and I worry that I won't be able to be there for them as I will be away in the hospital while my little angel has her surgery's. I just hope and pray that god will lead me to make the right choice.

jc_twomamas · December 2014

Unfortunately only you, your family and your medical team can make these decisions. I'm sorry you are going through this. Hopefully you can find a good support group/team in your area.

littlewest1 · December 2014

I am very sorry you have to go through this. As @bowman958 and @katern08 have said, we have a friend that has a two month old with this condition. He is happy and healthy now but has already had to have two surgeries and will have to have more in the future. She had to meet with several specialists and be monitored very closely during pregnancy and her son has to have very close monitoring now. It does take a toll on the family and it will be a very big adjustment. It is not a dealth sentance though. Only you will know how much you and your family will be able to handle and I would make this decision based on the information you get from your own doctors and your own situation. Good luck. Please keep us updated, we are all here for you even if it is just to vent.

Sharon&Paul · December 2014

sparkles80 said:

Yes that's what I'm talking about. My baby girl has hplh, cpc, and bilateral pyelectasis.

What is cpc?

sparkles80 · December 2014

Cpc is choroid plexus cyst. A cyst on the brain.

keifekm · December 2014

I'm so sorry you are going through this. I truly hope you and your daughter have a positive outcome.

picklesx · December 2014

I'm so sorry you have to deal with this. Have they done an echocardiogram on the baby? From what I've read, this condition can be suspected during an ultrasound but an echo is really the only way to definitively diagnose it. If just a regular ultrasound has been done, has your doctor referred you to a specialist to have this further looked at? If not, I would encourage you to discuss further testing options with your doctor.

At my anatomy scan, I was told that my baby's brain was missing the cavum septum pellucidum and the corpus callosum was underdeveloped and was sent to CHOP for more conclusive testing. Everything ended up being fine. I hope this is the case for you as well that it ends up being nothing.

I will keep you in my thoughts.

picklesx · December 2014

sparkles80 said:
Cpc is choroid plexus cyst. A cyst on the brain.

Also, I don't know if this will make you feel any better, but CPCs are not uncommon in fetuses and, more frequently than not, they tend to resolve themselves by late in the 3rd trimester. I hope everything works out OK.

sparkles80 · December 2014

Found out yesterday that the baby's heart is unoperable do to the size of her heart. She will be resting with all the other baby angels soon.

epidemic · December 2014

@sparkles80 I'm so sorry to hear this update. Please let us know if there's anything we can do.. you'll be in my thoughts and prayers!

bowman958 · December 2014

So sorry

littlewest1 · December 2014

Oh no, I am so sorry to hear this. My my thoughts are with you and your family.

fro88 · December 2014

sparkles80
It can all be so unfair sometimes. Please be kind to yourself, and know I am sending you warm thoughts and best wishes for comfort.

c+est+la+vie · December 2014

So sorry to hear this

My thoughts are with you and your family.

Edited: To fix wording

Jlotterman · December 2014

So sorry you and your LO's are going through this. My thoughts are with you and your family.

jc_twomamas · December 2014

Oh sparkles I am so sorry. Sending many many thoughts and prayers your way throughout this time.

Jlotterman · December 2014

I know there is nothing that any of us can say to ease your pain. I am thankful that you didn't have to make a very difficult decision and that your sweet baby angel will know no pain. Hugs to you.

picklesx · December 2014

Oh, @sparkles80‌ I am so, so very sorry.

meganbethg · December 2014

I'm so sorry. Prayers for you, your LO and family.

ejay15 · December 2014

I'm so very sorry @sparkles80. Thinking of you and your family right now.

specialsn0wflake · December 2014

I'm sorry for your loss. I hope that you can soon find peace. My thoughts are with you and your family.

Stucas · December 2014

I am so, so sorry

jk3610 · December 2014

so sorry, sparkles :-( please take care.

MrsRem217 · December 2014

I am so sorry. T&Ps for you and your family.

springlove59 · December 2014

I am so sorry for the update @sparkles80‌ . My mom joined a loss group after my sister passed. Please know that my thoughts are with you during this time.

starshollow · December 2014

So sorry to see your update. You are in my thoughts.

islandmom79 · December 2014

I'm so sorry Sparkles. You and your family are in my thoughts.

Cliffhaven · December 2014

Very sorry

sagehens47 · December 2014

Oh Sparkles I am so incredibly sorry. My heart goes out to you and the family. I hope you can find all the support and comfort you need during this time.

JAP09-02 · December 2014

I'm so sorry.

pepperjack76 · December 2014

So so sorry you are going through this. My heart goes out to you. You and your family are in my thoughts and prayers.

kamomo1 · December 2014

So sorry to hear this. You and your family are in my prayers.

Sarah04Marie · December 2014

I'm so sorry you are going through this. My thoughts are with you and your loved ones.

@snowbigdeal - thank you for bringing the update to my attention.

My baby sister was born with HLHS and is an angel baby. She got her wings at the sweet young age of 5 months. My parents were unaware of her diagnosis until she was born - they detected a 2-chamber heart beat on the Doppler but couldn't see it on the ultrasound. Back then, ultrasounds weren't as good as they are today. My parents raised us knowing what a special little girl she was. We celebrated her birthday each year, talked about her regularly, and spent extra time together as a family on the anniversary of her passing. My mom continues to find comfort in online communities of parents who have lost a child with HLHS. I find comfort in following Facebook groups of families who have children born with HLHS and donating to the sick kids hospital foundation each year in memory of Julia. My thoughts are with you during this incredibly difficult time.

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