has anyone had a baby who needed open heart surgery?

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Lana-Gail - posted on 02/23/2009

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yes do you have a question that you are looking for an answer too  My son has had serveral open heart surgeries I would like to help you

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Camanh - posted on 03/10/2015

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I feel so sad
My nephew was born with many heart problems and will open heart surgery this month
Please help and pray for my little nephew He was born with many heart problems.
And now his parents have to face high price for open heart surgery

Allansyachtseattlewa - posted on 10/30/2013

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I was born needing an open heart surgery my mom was there for my 3 heart catheters and 2nd one procedure at age 5. Myself I am male, now 50 - which docs said I wouldn't live past age 5, then 6 etc up to age 28. Support and love is important by both parents - as kid I don't remember the pains of healing as much compared to now when I had my 3rd in 1998 since then I have been on warfin and I have chronic chest pains from the bones not healing correctly and the wires snapped too.

A.D.
Bosoxfan1963@gmail.com

Ashley - posted on 08/23/2012

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yes my son had open heart surgery yesterday august 22 2012 at sick kids hospital in Toronto Canada. and is doing really well today !!!!! he is only 6 months old

Paulette - posted on 02/26/2009

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Quoting Marla:

Thank you for all your information. My daughter is 6 months. She has ATRIOVENTRICULAR CANAL DEFECT. Her surgery will be at the childrens hospital in Minneapolis. What was it like when you brought your baby home? Was it scary? How did you lift him, carry him? Anything special you needed to do. Thank you for talking with me its so helpful.



Hi, I was actually so relieved that when we came home to Florida. I was able to relax more because I felt the worse of things was over. If they felt strong enough to release him from the hospital and travel for hours to get home then he must be good/safe. It is surprising how resilient they are and with pain relief it is easier to move them. I just watched how I picked him up from a laying down position or sitting up too. I gave his back the support to keep straight and not to arch. To me that is the most important part to remember, that way the breast bone will heal more even and the incision will heal smoother. But they put a bandage and then tape over it initially. If I remember correctly when he came home they used a white tape and used a few layers. I left it on till it came off it self but cleaned over it and clipped off the sections that were loose and cleaned it too. I was afraid I would hurt him to pull it off.



You will see how relaxed you'll be once you get the good news after the surgery. Then again when you reach home and after she sleeps through the night thr 1st night home. The key thing that helped me was to pray for calmness, it helped keep me centered. Lean on your husband for comfort too. I'll pray for your daughter and hope for the best. Keep me posted when you can. Take care. =0)

Natalie - posted on 02/23/2009

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Hi, my nephew had open heart surgery at 3months old to have a valve repaired and he pulled through just fine and he's healthly 3 year old now.

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Thank you for all your information. My daughter is 6 months. She has ATRIOVENTRICULAR CANAL DEFECT. Her surgery will be at the childrens hospital in Minneapolis. What was it like when you brought your baby home? Was it scary? How did you lift him, carry him? Anything special you needed to do. Thank you for talking with me its so helpful.

Paulette - posted on 02/23/2009

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Hi Marla, My son had open heart surgery at 8 months for Atrial Septal Defect. We took him to Delaware to have the doctor who develop the surgery for this condition. I wanted the best in the country.  What you can expect is to be checked in and to complete paperwork. They may want to do preliminary bloodwork to make sure there isn't anything wrong or if the baby is sick. In the morning before the surgery time the person who does the anasetheologist will talk to you and have you sign paperwork. Make sure your make your wishes know. At least where we went they let me walk and hold my son all the way to the surgery doors. I would ask if you can do that too because it helps both you and the baby to be calmer. After surgery they go into intensive care for 24 hours at minimum. You will be able to visit for short intervals and will need to wash up and wear a gown every visit. Then they go into their own room. Are you going to have a bed in your babies room? We did and we both were able to stay with him. Your child will have a monitor on them to keep track of their heart rate. When possible after surgery when your baby can be walked around away from bed, they may have a halter monitor. We did and wheeled him around in a wagon with pillows underneath. Nursing will be possible after intensive care, so I would use a pump and express some. That way they can give it to your baby while in intensive care. If you don't they may want to give them formula instead, once they are awake and alert. Most hospitals you can rent a pump when it is medically necessary. If you can't stay in their room, see if a Ronald McDonald House is nearby. In our case, the hospital was out of state for both us and the grandparents. We were able to stay with our son but the grandparents stayed at RM house. Is the hospital close to home? I would make sure you have plenty of cash on hand for phone calls (cell phones are not permitted usually), snacks and meals (coffee and drinks too). For staying over I would take what you would need for 3-4 days at least, don't forget hair products and a hair dryer, etc. If all goes well you should be going home in 4 days I think it is. I hope that I have not left anything out. If you have any questions let me know. I hope later after the surgery and things are fine that you can update us and let us know how it went. I will keep you in my prayers. Take care.

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Hello, thank you for your response. My daughter is 6 months old and will be having open heart surgery in 10 days. She has ATRIVENTRICULAR CANAL DEFECT.

I was wondering what to expect? How I will be able to care for her, lift her, feed her( i nurse) after surgery. Thank you, Marla

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