How do you deal with the news that your baby's heart is not formed right?

Mary - posted on 08/01/2011

My son is 5 years old and has HLHS. There is hope for these kids. I live in the States, and there are wonderful doctors here and plenty of help for these kids. DON'T let the doctors scare you with their statistics. They have to give you the worst case scenario so you can prepare for it, but with the technology today, and the knowledge that the doctors have learned over the years, these kids are capable of living a normal, long life. My son is a miracle child, with no other health issues, and he lives a very normal life. I will pray for your daughter. Find a good doctor, and a good hospital. You have time to research them. Keep your head up, and if you want to talk you can email me at mtblessedmom@gmail.com. This is scary I know, but there is so much that can be done for your baby. My son had what they call a three stage surgery instead of a heart transplant. His first surgery was at a week old, second surgery was at 7 months old, and he had his third surgery a year ago. He is healthy and strong. His doctors say that he should not need any more surgeries, and they are even talking about taking him off the medicines he takes. It will be tough, but you don't have to go through this alone. There are support groups, and others who have gone through this as well. My son's surgeon also does a study that my son is part of to learn more about this heart defect and the kids as they grow up. Please have hope, and feel free to contact me if you have any questions.

Quinn - posted on 08/01/2011

For starters, try to see the positive even in this devastating situation. You have been given the news at a time where you can prepare for it completely. Sometimes, this heart problem is not detected until after birth and the baby is most often then near dead in your arms. Everything in the baby's system crashes and it doesn't get enough blood or oxygen to any of it's vital organs and it is a severly traumatic experience to witness, not to mention how helpless one feels. I unfortunately speak from experience. So really try to feel grateful that you know about this now. We have an 8 year old (in Sept. 9) who has HLHS. I am an American living in Germany. The German doctors in the clinic our son was life flighted to did an amazing job and I don't think it would have been "better" in the states. The hosptial that you have your child operated in is of importance though. Please make sure that you like into what is available in Canada and find a team that specializes in HLHS surgeries and not just heart units. At the time of Jeffrey's birth there was virtually no information available to parents in Germany. We started a forum and website here that is EXTREMELY helpful for parents- especially after the initial shock. Unfortunately, it is only in German. However, I would be more than happy to call you (send me your phone number by email) and we can talk or you can email me privately. mail@schulzefamily.de or +49-5136-9765009 I think one of the greatest experiences in the beginning was meeting parents who had older children with HLHS - I was able to see what could become of my child and how absolutely normal they are. It gave me the hope I needed to get through the long hospital stays (Jeffrey stayed statistically longer than most) and the worrisome nights. It is not an easy diagnosis - but as much as I hate to say it - it coul be worse. Our son Jeffrey plays as the soccer goalie and has for 4 years now. He goes to training 2x a week just like the other kids. In a neighboring city we know (through our website) another boy who made it through his surgeries even better off than Jeffrey and he can actually play during the game and you can't tell the difference between him and the others. (Jeffrey gets out of breath pretty quickly, and can't run up and down a soccer field for more than a couple of minutes, however he wants to become a rollercoaster engineer because he LOVES to ride rollercoasters - you know, the ones with the signs: DO NOT ENTER if you have heart problems etc.) I could write books on the subject. Like I said, you are welcome to get in touch with me. Sincerely, Quinn

Debbie - posted on 08/01/2011

Hi hun, to to hear this, but keep an open mind wait till u hear all the facts, and dont forget doctors can do wonders now day by keyhole, try to keep your chin up walk high be strong.
sending you all my love & hope all will be ok
((((HUG))))

Tashira - posted on 07/31/2011

I WILL KEEP UR FAMILY N MY PRAYERS BCUS I KNOW THTS A HARD PILL TO SWALLOW WIT YALL BEING SO HAPPY ABT BRINGIN A NEW BABY N THE WORLD JUST REMEMBER GOD DOESN'T GIVE US TOO MUCH WE CAN'T HANDLE IM PRAYIN FOR UR FAMILY!

Bonita - posted on 07/31/2011

I will keep your family, especially Emma Mae Anne, in my prayers. Know that she is in your life for a reason whether for a day or for 40+ years! I know that doesn't make this any easier, but I hope that no matter how long or short her life maybe that you can feel the special joy that only she can bring to you and your family! Wishing you joy!

Michelle - posted on 07/31/2011

Hi Anne -



Sorry to hear this ...



Please remember - God will not give you something to handle ... which you would not be able to deal with.

A friend of mine's daughter gave birth to a baby boy on 13 July ... and only after a week at home and having an infection ... did they realize he had some sort of heart problem.



Below is a link and some information that was given to us and also ... google the situation so that you can familiarize yourself with all the information to understand what this means.



The baby boy was operated on and now recovering after they have done the operation ... and the doctor even said that these babies can live a normal life ... but of course cannot go and play for the School's First Rugby Team .. but there is a lot they can do and have a full life.



So go and familiarize yourself with the facts and information to be able to deal with this situation.

http://www.cincinnatichildrens.org/healt...



It sounds so terrible because you are not currently informed well enough to understand all of this.



Hope all goes well for you and your family and will pray for you and the baby.

Jane - posted on 07/30/2011

What about The Hospital for Sick Children (SickKids), which is affiliated with the University of Toronto?

http://www.mountsinai.on.ca/about_us/new...

Anne - posted on 07/30/2011

Thank you for the sites though cause they have help me a lot in gaining hope for her to have a full life.

Anne - posted on 07/30/2011

I live in Nova Scotia Canada. I wish I could go to the states and get the help there.

Jane - posted on 07/30/2011

If you live anywhere near Boston, Boston Children's Hospital has been making huge strides in treating HLHS. They even do surgery in utero sometimes. Check it out: http://www.childrenshospital.org/az/Site... and http://www.childrenshospital.org/az/Site...

If you live too far away, then you might ask them which other hospitals deal with HLHS,

And actually they don't know how long she might live. Folks treated in the 1980's have made it into their twenties, but some are still going after that.

Anne - posted on 07/30/2011

So we found out Friday from the IWK what it is the baby has and it is not what they thought it was it is worse. It is called Hypoplastic left heart syndrome. This means that the baby's left side of the heart is not and will not work and that the baby will need surgery and possibly after them a heart transplant later on in life if she lives that long. Based on the work done in the 80's some of them live to be 20 but we were told if the surgeries go well she could live to be 40 or older. Or she could only have a few months or years. I choose to believe that she will live a long time. Oh and they told us that the baby is a girl her name is Emma Mae Anne.

Jane - posted on 07/21/2011

I am also sorry to hear this.

If I were in you r place I would learn as much as I can about this problem, stay on top of what the doctors are saying and doing, and pray. Also remember that if your baby does have a heart defect, it is not something you caused in any way. It happens very early in gestation, no one knows why, but it typically isn't genetic.

A fetal echocardiogram is a specialized ultrasound that allows doctors to see the baby's heart in great detail and plan the best care for the baby while still in utero. This is usually done somewhere around 18 weeks or so. This will give you and the docs a better idea of what is going on. It is always possible, too, that the baby's heart may develop enough that the doctors will be able to fix the heart defect after birth. The doctors will continue to monitor the baby right up to birth.

You will probably be referred to a pediatric cardiologist, who can tell you what if anything can be done.

A helpful web site: http://kidshealth.org/parent/medical/hea...

And another http://your-doctor.com/healthinfocenter/...

If the doctors confirm the bad news, then I would do one other difficult thing. I would plan what you will do if the baby does not survive. Just as my 84 yo father has told me in detail what he wants done when he dies, you should decide now what to do if the worst happens. If you have this planned it will be much easier to make it through the loss and grieving. It can also make it easier for your family and friends to help you by letting them know what you want to do.

Shannintipton - posted on 07/21/2011

I am sorry to hear this. I will pray for you and your baby. Good luck :)