Have any of your children had a serious surgery? If so can you please share,?

Question

My son will eventually have heart surgery and I feel so alone with my feelings.

Answer 1

I feel like I could write you a book. What kind of heart condition does your son have? My daughter was diagnosed with Tetralogy of Fallot right after she was born. Basically, she had a hole in the septum that divides oxygenated blood and the unoxygenated blood. Babies with her condition are usually called "blue babies." My daughter had a mild case and she never turned blue, but it was something that was never going to heal on her own. Last September, Amber, when she was six months old, had open heart surgery at Children's Mercy Hospital in Kansas City. Everything went very well and hopefully, she won't ever have to have surgery again. We just have to watch her to make sure that her repair grows with her. Before the surgery, she was in the less than 5% percentile for height and weight. At her nine month checkup, she was in the 50th percentile for both height and weight. We have her one year checkup on Friday, but I already know that she is doing quite well. She has a cousin that is three weeks younger than her, and Amber is bigger and way more active.

The surgery was very scary and I don't think I would've gotten through it without the support of my family and friends. I had a friend who used to work in the neonatal intensive care unit, and she calmed me down when Amber was first diagnosed. She basically told me that Amber's surgery is just going to be another day on the calendar and that I was going to love her with all my heart. Basically, I accepted the fact that I had a child with a medical condition, just like a mother who has a children with asthma.

I'll tell you one other thing that really got me through it--there's a movie called "Something The Lord Made." It's been on HBO, but I bought my copy from Walmart. It's the story of how open heart surgery came about. Basically, the started the whole process by wanting to help "blue Babies." It's a very good story and helped me feel reassured at how common the procedure was. It doesn't focus much on the parents or their worries, but about the doctors who figured it all out. You really should check it out.

You can e-mail me if you'd like...

Answer 2

Yep, both of them.

My son had a spinal fusion when he was 11. Basically he was opened front and back and had a rib removed and a bunch of the bones in his spine scraped and then screwed and wired together. It was really horrible.

What was most horrible for me was the feelings I had before - there was a not-miniscule chance that he could be paralyzed if something went wrong, and I actually wished he would die rather than live a life like that. I felt so horrible for even thinking that, but I did. After, seeing him in such pain was terrible. It's not exaggerating to say I'd rather have felt the pain myself than watch him go through it.

Now, though, he's healthy and normal and 14 and making us tear our hair out with the normal 14 year old things.

Eight months after his surgery, I had a daughter by emergency c-section at 23 weeks. That was so scary. We were incredibly lucky that she didn't have a whole lot of problems, relatively speaking. But she was on a ventilator (breathing machine) for nearly three months, which is a long time even for preemies. We didn't know if she'd make it at all - 50-70% of babies her gestational age die, even in good hospitals. Finally when everything looked good and she had been home for a week, we had to go BACK to the hospital for eye surgery - her retinas weren't developing properly. We went back in on her due date.

That was so hard, 'cause we thought we were "free". They also don't use anesthetic or painkillers on babies for that procedure, so she was in such pain and fear. She was a never-cry baby who spent a week straight screaming after that. I was at my wit's end.

Again, with my daughter through the first four months of her life, I caught myself thinking about the worst case scenarios and thinking, "I'd just rather she die then spend her life a vegetable/with extreme cerebral palsy/a paraplegic/unable to talk or see or hear." Every time, I thought I was a horrible mom to even think such things, but now with some distance I can understand it. I don't just want LIFE for my kids, I want a chance at a GOOD LIFE, and all those things are things that would make me, personally, want to end my life. I have nothing but compassion and respect for people who go through that, and their caregivers, but I would never want to be that kind of burden on anyone.

Consider asking your doctor for a support group in your area. It can be a lot easier when you can share your feelings and know you're not alone.

Answer 3

Oh honey your not alone although you might feel like it. My daughter was a micropremature infant she was 1.7 pounds at birth 14 yrs ago born just shy of 24 weeks gestation {23 weeks 5 days}. During her first 48 hrs of life she had to undergo heart surgery at the time her heart was smaller then an acorn because the valve in the heart that normally closes after birth didnt {its called pda}. She had a less then 5% chance of surviving. Then it was discovered she had a bleed in her brain so a shunt had to be placed MANY times first in her stomach like 4 times they tried this using adult shunts in a 1 pound baby you can guess the outcomes. Then she had it placed in her heart during that surgery I was told there was a very good chance she could suffer a heart attack and die. 4 months later she grew so fast she was back in for another shunt this time it went into her gallbladder and has been there since December 24th of 1993. She also had surgery on her eyes which was minor compaired to everything else. When she was 9 yrs old she due to nerological problems was diagnosised with scoliosis and her curve went from 15 degrees to 75 degrees in a matter of months so she underwent an 8 hour operation to put rods in her back so that it would correct the curve allowing her heart and lungs to function properly and spinal fusion. During that operation I told her Dr "Jack if you come out before 8 hours is up I'll have a heart attack" her chances of surviving were also low due to the lung disease, he came out exactly 8 hours later smiling. In October of 2003 after almost a yr in and out of the hospital {more in then out} I was told she had stage 4 chronic lung disease and it was a result of micro aspiration and that involved yet another surgery. They went in and did a Nissen fundoplication w g-tube placement. She was also put on the transplant list. In May of last yr she was diagnosised terminally ill due to her lung disease progression and required one more surgery one that I promised myself I would never put her through but basically had no choice if I didnt let her have it she'd be in the hospital more and more and her life would be shortened even more then it was. She had a trachaostomy performed. Its been a yr without surgery and she didnt have surgery's every yr of her life the eye, shunt, heart were all while she was in the NICU,then many yrs past before the next and 2 yrs went by before she required a trach. I hope we dont have anymore but only a higher power knows for sure. What I do know is many of the "friends" my daughter made while in the hospitals didnt make it out way to many and knowing in the back of my head one day my Savanna will go in and not come home scares me more then the surgery's she'd had to improve the quality of her life

your son will be okay you just have to believe in your childs strenght, in the dr/surgen and staff and most of all believe that what ever is thrown at you, you can handle although it might not feel like it at the time.

Answer 4

My daughter had experimental eye surgery, it was a pretty radical procedure done by the head of pediatric opthalmology at Harvard University.

It wasn't life threatening, worst that could have happened was blindness, but that's still pretty scary for a parent. She's my hero.

My wife worked at Fred Hutchinson cancer research center in Seattle for awhile(premier center for leukemia treatment on the west coast) . Most of their patients are children, at the time(1983) their success rate was about 50%. Imagine going in there knowing that the kid in the room on either side of you was going to die.