Heart Defects

Hi. I'm new here and glad this board is here. My dd is due to have my first grandchild in November and she found out yesterday that the baby has a heart defect. I believe it is called "transposition of the great artery". The blood does not flow through the heart properly and the baby will need open heart surgery as soon as it is born to switch the arteries to the right places. Needless to say we are scared and confused. I am hoping someone here can offer some "been there done that" guidance. Any ideas on what to expect the next few months?

I am trying to offer my daughter the best support I can. I have experience dealing with a child with chronic illnesses (my ds has asthma and juvenile arthritis) but it just doesn't get any easier does it? I cannot explain how I want to protect my dd and fix this little one right now!

Thank you so much for any advice you can offer.

Hi from another heart grandmother.  My grandson Nick, also my first, has a heart defect.  He will be 13 on September 2.  Nick's defect was not found until he was 4 1/2 years old and he had surgery in 2001, very soon after it was found.  I know what you are going through.  Not only do you have to worry about your grandbaby, you also have to worry about your daughter.  It is worry that is doubled. 

I knew nothing about heart defects when Nick's was found.  I also didn't know what all the doctors can do for these kids and how amazing the kids are.  Last night I was at the ball park and I saw one of my friend's grandbabies.  This little boy is almost one and he was born with TGA too.  If you didn't know them, you would not have realized this little boy had a heart defect.  If you saw my grandson, you'd also never guess he had a heart defect.  My grandson does have to take medicine because he has a leaky mitral valve but other than that, he's doing very well.

While it dampens the joy of your daughter's pregnancy, it is actually good that they caught this and are prepared for your grandbaby's arrival.  The baby will be able to get off to the best possible start.  My grandson's defect was not detected before he was born, or even right afterwards, and his heart was enlarged from overworking.  We were lucky we did not lose him. 

I'm sorry you found a reason to have to visit this board but I am glad that we can be of help to you.  Please feel free to post with any questions you have and also, feel free to email me.  cherir1@peoplepc.com

Good luck to you and God bless.

Cheri, grandmother of Nicholas, partial canal defect, OH at Texas Children's Hospital in Houston

                                  Cheri

                    go to Heart Defect Information   

                           go to Nicholas' Website

                      contact me - cherir1@peoplepc.com      

   

                                   

                            

                               

 

                                                

Hi

My daughter, Madilyn, was born in May 2008, with Transposition of the great arteries.  Unfortunately we didn’t know about the defect until after she was born.  When she was about 10 hours old she had a Balloon Atrial Septostomy, which is a manmade hole between the chambers of the heart, this allowed blood from both chambers to mix.  This stabilized her until she had open heart surgery at 4 days old. 

The doctors say Maddy is a text book case with no major complications, she healed fast and was able to come home when she was 12 days old.   The only concerns we have had are her weight gain, she is 14 months now and only weights 18.5 pounds.  She is also having some physical therapy to improve low muscle tone.  But, she is doing great, she just started crawling 2 weeks ago.  She has had several EKG’s & Echos to check her heart, and her doctors are very happy with how it’s functioning.  If you would like, you can check out my blog at www.twobeautifulblessings.blogspot.com to read the whole story.  I also have some pictures posted.  It would have helped me to know what she was going to look like after surgery, so feel free to look at the pictures if you would like.  I know I have been neglecting this blog for a while now & I need to start posting again.  

 She will need life long follow up care to make sure things are OK with her heart but, thanks to answered prayers & great medical help, I know Maddy has a great future.  I hope & pray that your grandchild heals as well as Maddy did.

Jamie – Mom to:

Tristyn & Madilyn (TGA)

Thank you for the kind replies. Cheri, you are so right about the double worry - I did not realize it would feel this way. Now I know how my mom feels. LOL I have learned alot in the last two days, since this has come to light. I am new to this grandma thing and this may sound silly, but I did not understand the depth of my feeling for this little being even though it is unborn. Amazing.

I will definitely check out your blog, Jamie. I am so anxious to learn more about how this will all go and be prepared for anything. I did check out Cheri's website about her grandson and it is wonderful to see him growing so well.

Thanks for the welcome. I look forward to getting to know more about this board.