DD diagnosed with heart defect

[Pea-n-Me]

I take care of adults (and once in a while children) with problems like these in the hospital after the closure/repair procedures. Ours usually go home the next day and it is rare to see major complications. Best of luck to your DD.

VSD: http://www.americanheart.org/presenter.jhtml?identifier=11066

PDA: http://www.americanheart.org/presenter.jhtml?identifier=1672

 

[DisneyCP2002]

 

[TinkerBess_SnowTori]

Modern medicine is so incredible - I had surgery to repair the same defect when I was 18yrs old - getting close to 20 years now, and I was in ICU several days, in the hospital for at least a week and wasn't allowed to work for the rest of the summer.

Last year a little girl at our day care went in for the surgery on a Friday and was back on that following Tuesday. The doctors had said she could come back on Monday but the parents wanted to keep her home an extra day.

hugs and prayers for you and your daughter - she is living at time that they can do amazing things - I am sure she will come through it beautifully

 

[Disney Doll]

I was born with an Atrial Septal Defect which I had repaired at the age of 7 (in 1969). Heart surgery back then was a lot different than it is now and I was in the hospital for three weeks post-op. I had an uneventful post-op course with no complications...that was just the way they did things back then.

Truthfully, I don't remember it as being terribly traumatic. My parents were very matter-of-fact about it...they were not the types to go in for a lot of drama. Now, they may have been totally distraught on the inside, but they never showed it on the outside, and that made me all the calmer.

I am now 43 years old. After the recuperation period (which again, back in those days was about 2 months) I was fine, have always been fine, played sports in grammar & high school, went to college and have been a nurse on a med/surg unit (very physical job) for 22 years. It never in any way impacted my life or activity after I was through the recovery period. I rode bikes, ran around, did everything just like other kids. Today I am in training for the WDW 1/2 Marathon, and just this morning walked 9 miles as part of my training schedule.

Best wishes to you & your child. Please feel free to PM me with any questions. I will try my best to answer them.

 

[roseprincess]

Prayers and pixie dust for your dd, you and your dh.
I know it can be scary.
My dd is 8 yrs. old now. She was born with a complex congenital heart defect, Truncus Arteriosis, similar to Tetrology of Fallot.
At birth, the ped. and neonatolgist heard a murmur right away, a couple of minutes after she was born. A ped. cardiologist was called in right away. He diagnosed her right away. She was taken to a hosp downtown Chicago that night(I live in the northwest burbs of Chicago). She had her first open heart surgery at 5 wks old, to put in a conduit and repair the VSD (Ventrical Septal Defect). She had her second conduit replacement open heart surgery at 18 months old. She will need more surgery when she outgrows the conduit.

Your dd will be fine with the surgery, to close the VSD. Even tho it is an open heart surgery, itis a simple surgery for the docs than the more complex heart surgeries.
My dd's pediatric heart surgeon was Dr. Joseph Amato. He literally saved my dd. My dd did have a huge complication from her first heart surgery, she almost didn't make it. But with the grace of God,she pulled thru.
If you bring up Dr. Amato's name to your dd's heart surgeon, he/ she might know him. Dr. Amato used to do ped. heart surgeries in the northeast, either in New York or Boston, before he came here to the Chicago area in 1995.
He has been doing pediatric heart surgeries for over 30 yrs. He really is a Godsend here in Chicago.

Question, is your dd on Digoxin(heart med) and Lasix? For me, I would be concerned with helping to control the palpitations at night,using those meds to help with her heart pumping and any arrythmias, that she should be on those meds, since the surgery isn't until January.

Best wishes again for your dd's surgery.

Rosemarie

 

[Alice28]

Chiming in that I also know someone whose child had this as an infant; they did the surgery when he was 1 month old and now he's a healthy, normal 8 year old. I will keep you and your DD in my thoughts.

 

[Alicia87]

My DD14 was born with Tetrology of Fallot and a VSD along with absent pulmonary valve. Had her repair done at 7 months, and just had a pulmonary valve placed this March.

The worst thing about it is not having anyone to talk to that has "been there and done that"!!! If you need to talk at all, please feel free to pm me!!!

I know it's hard not to worry, but the dr.'s always told me the worse thing to do was "hover" over her and not let her be "normal".

DD has always been extremely active, competed in gymnastics for seven years, and has been in competitive cheerleading for three years now. She also tumbles like there's no tomorrow. She isn't nor has ever been on any meds (except before dental procedures).

Lots of prayers comin' your way!

Alicia

 

[6_Time_Momma]

I've had three kids with heart defects.

Bradley had an 2 VSDs, which closed on their own when he was three. Destiny had an ASD, which closed on it's own around 2. And Garrett had an endocardial cushion defect and PDA. He had to have open heart surgery when he was 3 months old.

It's a very frightening thing. It will be especially difficult to see her when she comes out of surgery. Garrett seemed like he had tubes coming out of every opening in his body, and also out of opening that weren't there when he went into surgery!! He did incredible. He was in the hospital for 10 days (this was almost 14 years ago). He was like a new baby after that though!!!

Best of luck and prayers. If you want to PM you are more than welcome!!

 

[Lil_Tink]

Dont worry. It will be alright.

 

[llij]

to you and your DD!

 

[JVL1018]

My son has/had an ASD(atrial septal defect).
Same deal-a hole in his heart..I believe an ASD is less worrisome than a VSD as it usually doesn't cause any symptoms, but it's similar.
He was diagnosed at 1 year(Sept 2002) and he went back for echos/EKGs every year. WE knew it would never close on it's own as it was too large(16 mm)
He had the procedure to have it closed last month 10/12, just after he turned 4.
I don't know how they will close your DD hole, but my son had an a device closure-they threaded a catheter through a vein in his groin and put the device in place that way.
He had a small needle hole in his groin and thayt was it, no stitches, no staples, no nothing. Just an IV.
He had it done at Columbia Presbyterian in NYC by Dr. Hellenbrand who is wonderful!!
We went in, he got taken back, we stayed with him-he drank some medicine that made him feel a little woozy-nothing bad, just got a little silly-we walked back into the cath lab with him stayed with him as the anesthesiologist put him under and then waited outside. Less than 2 hours later his surgeon came out to say everything went fine and he came into recovery a short time later.
He slept for about an hour and then woke up saying his leg hurt and they gave him Tylenol.
He had to keep his leg straight for a couple of hours and other than that there was nothing special he had to do.
He stayed overnight(I stayed with him) and he was released at noon the next day.
He has to take one baby aspirin a day for 6 months and gets follow up echos in a couple months(he's already seen his cardiologist for an EKG) and then again in abot a year.

Though he was asymptomatic before, I notice that though he used to whine about being too tired to walk after a block, now he will run the 3 blocks to school with no trouble.

He had no restrictions whatsoever before or after the surgery.

I worried about this every single day for years and then the actual procedure was so simple and easy.

One other thing that made me feel better..his cardiologist told me that it is a big deal for us, he understands that, but for them it's so not a big deal, they see this every day and it is simple to fix.
Your DD and you and Dh will be in my prayers-if you ever need to talk, PM me.

 

[Mimi Q]

 

[Charleneluvsdisney]

My son had surgery for an ASVD (Atrial Ventricular Septal Defect) when he was 7. He was in the hospital on a Thursday, and we were home on Sunday. It is amazing what they can do for kids with these types of defects and I am sure your dd will be fine!

My son still goes for yearly check-ups and he will always be pre-med for dental procedures, but other than that you would never know that he had a problem.

My thoughts are with you and please feel free to pm me with any questions or just to talk about it. You may want to also check out heartcenteronline.com - there is a ton of information and a chat board too that I consulted numerous times.

 

[Dis_Grk Grl]

Thank you all! Everyone has been so amazing. All of your kind words and stories have really helped. Of course, nothing will take away the worry, but you have all been so wonderful in your responses and that means so much. Thank you for all of the PM offers, I will probably be taking you guys up on the offer as her surgery date gets closer.
RosePrincess- yes she is on Digoxin, once a day before bed. We started the medication Friday night. The doctor said this will help control her palpitations, which was also causing the shortness of breath, until January. We are just monitoring her over the next few days in case she develops an allergy to the meds.
JVL1018- I have discussed a device closure through PM with another DISer. It was something my doctor mentioned to us, he just wants to be absoloutly sure that the hole is small enough to close that way. We have a follow up exam on December 9th. That would be wonderful though, one night in the hospital as opposed to 2-3, and the fact that it is not open heart surgery.

My family and friends have been wonderful the past few days, trying to keep our spirits up, and I know in my heart everything will be fine. But you guys at the DIS have been wonderful also. What a caring group of people, I am so happy I found the DIS!
I will keep everyone posted.
Nicole