advice when it comes to newborn heart surgery?

Question

Please Help with any experience or advice. 7Months pregnant, had level 2 ultrasound and found that baby will be needing heart surgery at birth. One of the main artieries pumping blood out is too small other is way too big. anyone ever expereince this with their child, and what can I expect and just anything that will be helpful, I am terrified of what will happen. thanks

Answer 1

Hi...I am so sorry you are going through this, but the good thing is that you know in advance, which will help you prepare yourself for the surgery. I am not sure who it's tougher on, the child or the mommy.

My daughter is six years old and 100% healthy, but she did have open heart surgery when she was just 3 weeks old. We did not find out about her heart defect until she was 1 week old. It was a complete rollar coaster for us. She was born with two holes in her heart, and did go into congestive heart failure at 2 weeks old. Now you would never be able to tell except for her chest scar and two chest tube scars. When someone asks her about it, she tells them she is Momma's miracle baby.

You should go and tour the CICU unit of the hospital that your child will have the surgery at. It's tought seeing those babies hooked up to all the monitors, IV's and wires, but it's better to get an idea of what things will look and sound like before it's your baby in there. Have your support person with you, it's going to be tear-jerking for you.

My daughter's surgery took 5 hours total. I handed her to the surgeon's nurse, who took her into surgery. I then sat in the special waiting room with my family, and the surgeon's nurse called every so often to update me on the progress. She was in the CICU for 5 days, and then went home with only motrin for pain and a feeding tube in her nose- which we were able to pull out after 48 hours. Her recovery was amazing, and they keep them very sedated so they feel as little pain as possible. I only wish they could have sedated my heart at the time...it was truely the toughest thing I have ever done or been through. I only tell you this because no matter how many people tell you everything will be okay it will still tear up your heart and emotions. However, with that said, you will get through it and so will your child. Listen to the doctors, if they feel confident in the surgery then you should be too. They will tell you is they think you should be concerned, so trust them. Also, my daughter had 5 IVs, two chest tubes, the respirator and several monitors hooked up to her, that constantly beeped and so forth. Everyday, something would come off as she got better and better. You will be amazed at how fast they heal from this.

Most of all, try your best to take care of yourself. You will be going through alot of hormonal changes at the same time, plus recovery from labor and birth. Please take it easy. Don't be afraid to ask for help.

It's going to be hard, no doubt about it. I took pictures everyday to document the entire experience. I still look at them from time to time to remind me how precious life is and all the trauma we went through. It changes your entire prespective on things. You will get through it, and the other side of this is beautiful. These children are born fighters, and it's a blessing to have them in our lives. You will make it, so will your child...and it will be okay.

You and your child are in my prayers.

** Also, please feel free to go in my profile and email me if you have any other questions I can help you with. ((Hugs))**

Answer 2

I had open heart surgery when I was 4 years old, it was found at birth, but the procedure was not perfected until I was 4 years old. My grandson had open heart surgery 8 months ago at 2 days old, believe me, the doctors know so much more now and these surgeries are usually very successful. My grandson has no adverse effects from his surger and his scar is so much smaller than mine. His cardiologist says his scar should disappear by the time he is 5 years olf. My scar is 12 inches long and VERY prominent, but still better than some I have seen. If the doctor recommends surgery, make sure you find out the success rate they usually have, get the best doctor you can and pray. Find out what the survivial rate would be without surgery and what it would be with surgery and make your decision then. But do remember that infant cardiac surgery is so much better than it used to be and have faith that God will protect your child.

P.S. After your child has surgery and everything comes out fine, be sure to ask his or her cardiologist about premedicaiton before dental procedures. When you have any kind of heart problems you have to take antibiotics before you get your teeth cleaned or it can cause infection and even death.

Answer 3

If you're delivering in a hospital that has a Neo-Natal Intensive Care Unit (NICU) or something similar, you have ABSOLUTELY nothing to worry about! NICU docs or anyone who specializes in babies, for that matter, especially ones who are doing delicate surgery like this are often the BEST in their field. Besides, babies are tougher than they look. What might take an adult a year to recover from, a baby will bounce right back from in weeks or months.

Not only that, with the advances in medicine today, they do amazing things that save lives and let these kids live completely normal lives.

See if you can meet the surgeon who's going to be operating on your baby, sometimes just knowing makes it easier. The surgeon will be able to explain to you exactly what's going to happen when and what you're going to see and expect for just about every step. It can't hurt to meet a doctor you're probably going to be seeing a lot of for a few months.

I know of a kid who had open heart surgery when he was less than a week old. I now see eye to eye with him - he's seven years old now, and nothing stops him!

Good luck!! I hope everything works out. =)

Answer 4

Relax, take a deep breathe, everything will be just fine, i know this, because a girl friend of mine had 4 heart surgery's all within the first few months of life, she is now 23 yrs. old, and if they were that good then, technology now is 1000 X's better, so don't worry, i know its scary not to know the outcome, but if they found it this early, they are getting a team ready to meet all the needs and demands that your little one is going to need. I hope this helps ease your mind just a bit, I know all will go well. Just Pray for the courage to get through it okay!

Answer 5

I see babies all the time who have undergone major heart surgeries including heart transplants and almost all of them recover quite quickly and quite well. If the surgeon has done a lot of the same surgeries before I'm sure your baby will be fine. I'll keep you guys in my prayers.

Answer 6

Trust in GOD... Expect the worst, so anything less than that is his divine Grace. U seem to be prepared and thats what you need to be. Make sure u check with 3 or 4 other docs b4 u make any decision. An alternate oppion is a must.

Answer 7

sweetheart please be calm i don't know the ins and outs but a friend has a healthy 13 month old that went through the same thing hes a bit small but fine and beautiful lots of love to you and yours xx

Answer 8

You PRAY my friend. Prayer is very powerful. You can also go to www.doersoftheword.org and the pastor there can help you & guide you. Nothing is impossible with God. Just have faith and believe in Jesus, the son of God.
I pray the best for you & your baby.

God Bless!

Answer 9

Sorry, I have no previous experience on this one, but wishing you all the very best of luck. (make sure you have enough support)