Heart Surgery

Good Morning M., I know you are very concerned for your little angel girl. I have a friend in India who's 8 yr old son Samuel just went through a hole in his heart procedure. I will contact John and get the information for you. India isn't as advanced as we are here in the States, but Samuel come through Awesomely. They placed a device like a little umbrella into the hole it covered the hole inside and another was released on the outside. this allows the tissues to grow over and cover the little umbrellas, sealing the hole.

I will get back with you M., have faith she will be ok.

God Bless you abundantly
K. Nana of 5

I don't know how much advice I have but I wanted to let you know you are not alone. At 12 months a murmur was detected on my daughter and after seeing the cardiologist, she has a large atrial septal defect. It too is a "hole in her heart". We have been monitoring it for almost 4 years. She turns 5 this June. It is not closing on it's own. We see the cardiologist once a year to monitor it and when she was 3 we had the pediatric cardiac surgeon evaluate her and his recommendation was to wait until she turns 5 to close it. (she's very small for her age) Our procedure involves using a device to close the hole and this device is fed through a catheter inserted in her groin. No open heart surgery. Do you know if you have other options than open heart surgery? If you haven't yet looked into it please do as much research as you can - there may be another way than opening her chest. As long as she is not getting sick and constantly getting lung or respiratory infections, you have some time to really research this. Find out your options for a pediatric cardiac surgeon and research who you want to perform the surgery. I feel fortunate to be living in St Louis with 2 outstanding children's hospitals here: St Louis Children's and Cardinal Glennon. She will most likely be having the surgery this summer or fall if the surgeon thinks she and her heart have grown enough to have a successful outcome. It's so scary knowing she will have to go through this but it's something that has to be done or else she will have significant problems or even die from it when she gets older and involved in sports. I have a tremendous amout of respect and confidence in our surgeon and have been and will be saying many prayers on her behalf. I wish you and your daughter the best...feel free to contact me with questions, comments, concerns...

My prayers are with you and your family. I know it is really scary to go down this road with your daughter. It is so hard to turn over your daughter to doctors and trust them....I understand. Two things-technology is so great right now. Visit: www.americanheart.org. This is a wonderful website to help you interpret and cope with what is going on with your daughter. You are also in a great location- St. Louis has top hospitals for pediatric heart sugery. Second, your daughter probably won't remember a lot of the stuff that is going on with her and her body is tougher than you think. I was diagnosed at age 1 with a heart problem...dealt with the problem for 17 years. Now as a mom, I can't believe all that my parents went through and are so thankful to them now. They made my life seem so normal and were such great advocates for me. Stay firm with your doctors, research and ask lots of questions. My parents kept a binder -documenting all the procedures/test that were done and the latest findings to correct my problem.

Also, be mindful of your son too. I had an older sister that was more effected by my problem than my family thought. I think that is often the toughest thing to do as a parent...balancing your time and keeping things as normal as possible. Talk to him often to make sure he is not keeping things bottled up inside.

Good luck! If you need to talk at any point, just let me know.

-T.

Nothing will make it any easier. It is absolutely the scariest thing in the world to know that your baby has to have open heart surgery. My son is 18 months old and has the same thing your daughter has, only a bit more severe. His pulmunar artery was completely closed off with no valve, which meant no blood was getting to his lungs and a large VSD (hole) between the lower chambers. He was 10 days old for his first surgery which was a temporary "fix" to get him by until he was older, bigger, and stronger (we left the hospital 5 days after surgery). At 10.5 months, he had the corrective surgery which closed up the hole and gave him a valve and came home 6 days later. He was up and crawling around as soon as we let him do so, 2 days after surgery. The great thing about the whole thing was that we had no choice. This had to be done if we wanted our baby to stick around, so it was a no-brainer. Yes, surgery is scary and yes, it does carry risks, but it is worth it. I probably approach this in a somewhat non-chalant way and I don't want to come off like it wasn't the most terrifying ordeal we've ever been through, because it was. But the more you dwell on it, the more miserable you will be, trust me because I've been there. Know that the doctors know best and are there to make your daughter better than new. If you have any questions about doctors or surgeons, let me know. we have WONDERFUL doctors at Children's Mercy.

Good Morning! You have recieved a ton of great advice and I really have none for you, but I did want to know that you are not in this alone. We have a 3 month old that was diagnosed with a heart defect 1 week before he was born. We did have a heads up, but it was still very scary. We are seen at CMH cardiology clinic and the doctors and staff are great. I just wanted to let you know that your daughter is in our thoughts and prayers when you are going through something like this I know the stories help, but they still are going through it at the same time. Im sure that your daughter will be blessed and be stronger than any healthy child could ever be!

May prayers and blessings!

HI M.,

This past summer I found out I had a heart condition and within four weeks of meeting my cardiologist I had heart surgery. I had an extra valve that was allowing my heart to beat over 220 bpm. They went through my femeral artery(in the groin) and less than 16 hours after my heart surgery I was released and back at home. I do realize you are talking about your baby and I am an adult. I just thought I would share because my condition and the resulting surgery popped up so quickly we were shocked and terrified. Everything turned out well for us though. Find out exactly what kind of surgery they need to do, and how they will perform it before you panic. I wish you and your little one the best! P.S. My cardiologist said heart murmers are extraordinarily common in children. We were concerned my son, now 19 months old, would have my same condition.

Well, I don;t have advice on open heart surgery for your little girl, but I can tell you about a time when I had to hand my 8 week old little baby (my first child) over to a surgeon for surgery to correct a double cleft lip he was born with. I can also share the fact that in a year or two he has to have another surgery, and I am not looking forward to that at all. My stomach wrenches whenever the thought pops into my head. I understand how you feel and I imagine that its worse with it being her heart. I'd say do lots of researchon her particular issue, I find that knowledge is powerful in helping me understand my own feelings. Then make sure you talk to another Docter for another point of view. Not that you are looking for a different conclusion, but won;t it make you feel good to know that two totally different Dr.s came up with the same conclusion and all of this is absolutely needed? Then, (I don;t know if you are religious but I sort of am, and handing over your child for surgery has a certain way of making you religious right then and there anyway! haha) but when your daughter goes for her surgery, realize that YOU and your husband and family can do absolutely nothing to help her through her surgery but pray to God that those Dr.s fix her up and that she stays safe, to me that was a big point: realizing I had no power to control any of it and just taking a deep breath and saying "Dr. I trust you with my son, do your best". During her surgery just be together with your family and support each others feelings, and soon the surgery will be over (although it may feel like it takes days instead of hours or hours instead of minutes, etc.) and when you get to go and see your baby in the recovery room be strong for her, she'll need that from you. I wish you the very best of luck and you and your baby are in my prayers. :o)

my little boy had heart surgery a week before his first birthday in order to repair damage and implant a pacemaker so I know how scary t can be! You really have to trust that your little ones cardio doc has her best interest in mind and trust what he says needs to be done. the surgery has greatly improved my babys life. he went from never playing or eating to being a very active healthy boy. you just have to stay optimistic and strong. good luck

my nephew was born missing a valve to his heart. He had several heart surgeries that first year and several surgeries for years after, usually every 2 years because he would outgrow the tube/valve they would put in so as he grew he would have to have another heart surgery to put in a bigger immatation valve. They didn't expect him to live over 2-4 years. His heart totally deteriorated by the time he was 11 and had a heart transplant. After his transplant he felt better than he had his whole life and started playing sports and other things he couldn't do before. He is now 18 and doing great. We never knew how long he would be here but thank God for every day of his life. It was rough when he was a baby not knowing how long he would live but there are so many good medical procedures out there that help and if you can save the heart she has by having surgeries than that is a good thing. Even though we are happy he is still here with us it's also sad to think someone had to die for him to live but the doctors did all they could to keep his heart going that many years. If your child needs the surgery then don't put it off because it will probably get worse then you won't have as many options available.

Dear M.,

You are rightfully scared, but not alone. Heart Defects are the #1 birth defect--1 in 100 babies. Our son (will be 1 in 2 weeks) was born with 5 defects. He has had 2 open heart surgeries (first at 11 days and 2nd at 6 months). He needs a 3rd at about 3 years of age. We are seen at Children's Mercy in Kansas City and LOVE it. I've heard great things about St. Louis too. It is AMAZING what modern medicine can do these days. And, it's amazing how strong kids are. My son was released 5 days after his 2nd open heart surgery. Get as much info as you can and feel blessed that they found it in time--and it can be fixed!

I know a family who went thru a heart defect on their baby and the infant had to have surgery as soon as it was born. They were referred to Univ of Mich MC because I guess their pediatric cardiology dept is phenominal, and the most skilled in the country. Here is the website.

http://www.med.umich.edu/mott/chc/index.html

This lady is very committed to educating people on congenital heart defects. I would be happy to link you two if you want more info. Her baby is facing another heart surgery within 6 months. It was born with one ventricle. Here is one of her recent posts on her carepage, you may have to sign in, but on this there is a nice UYube video about these heart children....

http://www.carepages.com/carepages/ZacharyJohn/updates/19...

I wish you the best, and will pray for you and your precious children!!

I am a FTWM with 3 boys, was married, separated and just got back together, lets hope it works. I can relate to the trials you deal with as a single mom. Hang in there!!

No advice but I will pray for you.

I know its scary . . . and there are no guarentees when doctors enter the operating room but I will share my experience. Maybe it will help. My son was born in 1994 and at his two week check up the pediatrician detected a heart murmur. We were referred to a cardiologist who we had to see monthly (sometimes more frequently) for the first year of his life. He had a hole in his heart, or more specifically in the lower half of his heart. He had ventricular sceptal defect and had to take medications every 12 hours. At his one year check up, doctors were concerned that he wasn't gaining weight and growing enough so they recommended surgery. I thought he looked fine. I knew he was thin but so were his parents. However, with a lot of encouragement from the doctors, my son had open heart surgery at 13 months of age. We went to St. Louis Children's Hospital. The staff was fantastic. Things went well. 12 hours after surgery, my little baby was running up and down the halls - with monitors and wires attached to him. Its amazing how much faster children heal. And the scar is much smaller than it would have been if he had needed the surgery later. (he was embarassed by it when he was younger but now he's a high school freshman and doesn't seem to have a problem with it) We haven't seen a cardiologist since he was five and at that time we were told that with the exception of the scar, you would never know he had a heart problem. Oh, and I look back at his baby pictures - comparing the ones from his first birthday when he was sickly and underweight to pictures just a couple of months later and its truly amazing how different he looked. He started gaining weight and in general looked healthier. L.

My baby went through closed heart surgery. If there is anyway that she can have that done, instead of open heart, see if you can use that option. It is a little more painful, but the rate of infection and complications is much lower. Also, I don't know if you are willing to travel, but Boston Children's is the number 1 ped hosp for cardiac issues. So, that could be an option too. You can email them and send records, and they will give you a second opinion for free to discuss the child's case. If they are confident that the hospital you are near can handle it, they will tell you. If you want the best there is in the nation, you can go there. I have heard very good things from a lady who has been there.

I really hope this gives you some encouragement. One of my best friends was diagnosed with 7, yes I said 7, heart defects when she was born and had to have immediate heart surgery with a total of 9 open heart surgeries before her first birthday. She is now 30 and is a strong woman who is currently trying to conceive, she was finally given the green light to do so. She had one of her final surgeries about 3 years ago to correct one of her problems for the next 30 years. I cannot remember all of her official diagnosis right now, but one was a leaky valve, one was a valve not working correctly, a large hole in her heart (which is what the most recent surgery corrected), an enlarged muscle, etc. Anyway, my point is that she is a very healthy, very active 30 year old woman who has been through a lot but she has never let her heart get the best of her. Sure there have been some scares in her lifetime, but she is doing great. If she gets too stressed or worked up, her lips will start to turn purple and she has to calm herself down and when she was younger she would have severe leg cramps during the night while trying to sleep, all of which the doctor contributes to her heart conditions but she is more healthy and stronger than a lot of other 30 year olds that I know. Basically, I am trying to give you hope. I really hopes this gives you a silver lining and God bless you!