My name is Angela, and I have a 13 month old daughter that was born with multiple congenital heart defects. She was sent home undiagnosed as a newborn, and we came very, very close to losing her. We have been incredibly blessed, and today she is a busy, thriving toddler who just got a 9 month pass from her cardiologist! (Yay!!)

While I am aware of various support groups... they are mostly out of our immediate area (St. Pete, Tampa, Orlando) and I am looking for something closer to home. Are there any other heart moms out there who'd be interested in getting a little group of our own together? For support, socilization and true understanding of what it means to be the caregiver of a cardiac child.

Please respond....... thanks!

Angela

Angela, although I wish there was no moms going through what you are going through, I know better. I do hope other moms with the same issues will contact you and perhaps educate us a little more. Remember there are pregnant moms that frequent these forums. Maybe you can give us hints on what to look for to make sure newborns are checked out accurately so they will not have the same heart ache you must have felt when your daughter was born and undiagnosed. Also give advice to moms on what specialists you have seen that you give thumbs up on.

Angela, I hope for your family and your daughter a full and healthy life. Thank you for finding PolkMoms and seeking support here.

I am a mom to two little girls, both of whom were born with congential heart defects. Their issues are not genetic- I guess we just have really bad luck! My oldest daughter has a PDA and my youngest daughter has an ASD. I have been told by all of the doctors that their issues are considered minor, but of course to me, any kind of heart defect is a scary diagnosis. I would definitely be interested in talking to other parents to see what their experiences have been with different doctors and hospitals in the area.

bartowmom - my 2 year old was born with an ASD, and although I guess they're fairly common (most close up on their own before the 1st birthday), because my father and my husband's father both have defects as well we were referred to a pediatric cardiologist early on. Luckily, hers did close up by about 18 mos. but the time that we spent under the care of Dr. Reich (at Watson Clinic) was wonderful. He was good about answering questions, doing his best to reassure us, and when we had problems with billing from the hospital that did her echos he stepped in and handled that for us too. Another good thing about Dr. Reich is that he has priviliges at both BRMC and LRMC.

Thanks for your information! We also see Dr. Reich and have never had any problems. I just know that he has given us the impression that if either of my girls ever need surgery, he will not be the one doing it and it would probably not be in Lakeland. So I didn't know if I should just skip ahead and go see the doctor/hospital who would be able to follow them all the way through. But I am guessing that doctor would be a cardiac surgeon and we are not needing that yet. At this point both of my girls are still young and Dr. Reich is hopeful that both the PDA and ASD will resolve on their own- we are keeping our fingers crossed!

Great testimony ladies, thank you for your stories.

From what I understand, Dr Reich is the only pediatric cardiologist in Polk. I met him for a visit with Lillian once. It was thought that she could have a heart murmur. It seems it only manifests with fever.

Little T, I am so happy your daughter's issue resolved.

Bartowmom, I wish you luck on resolution and health to your girls.

Hi there fellow heart mommies!!

Unfortunately, for us, we had a 'not so wonderful' experience with Dr. Reich... which almost cost our daughter her life. I'm sure he is a wonderful doctor, and everyone makes mistakes..... but.... after that incident I am SO glad that we see a cardiologist in Tampa!!

I'll just throw this info out there in case anyone is interested.

We see Dr. Elsa Suh w/ Pediatric Cardiology Associates. PCA's has a group of about 20 different pediatric cardiologist w/ varing specialities. Their Tampa office is located in the downstairs lobby of St. Joseph's Children's Hospital on the corner of MLK and Habana (near Raymond James Stadium). I really like it there. I like taking my daughter to a place that sees such a huge, diverse population of children with heart defects/disease. It makes me feel reassured that they can handle anything..... because they see the most extreme, surgical cases on a daily basis.

If my daughter ever requires another surgery... she will be right upstairs in the Pediatric Cardiac Intensive Care Unit at St. Joe's. The doctors of Pediatric Cardiology Associates oversee the patients in the PCICU.... surgeries there are performed by Dr. Paul Chai, Dr. Jeffery Jacobs, and Dr. James A. Quintessenza... a VERY impressive group of pediatric cardiovascular surgeons! These surgeons perform surgeries at both St. Joe's and All Children's in St. Pete.

My daughter had Dr. Chai for her first surgery, and he is phenonmenal!

I have nothing but good things to say about the set up there with PCA and St. Joe's...... the drive is SO worth it!!

Here are a couple links in case you want to do some further research...


http://www.kidshearts.com/

http://www.sjbhealth.org/body_childrens.cfm?id=41

Best of luck to you Little T and Bartowmom w/ your kiddos!

Maybe if we get enough interest here on this board, we can start talking about getting a group together that meets regularly here in Polk Co somewhere!

Wow, Great Information Angie T. It is nice to know there is such a broad skilled option to Pediatric cardiology in our area.

Thank you!

Thank you Angie T! We have been given the impression by Dr. Reich that even if my daughter's PDA stays open, nothing will be done. But we have an echo scheduled again very soon so I am obviously a little confused about how serious of an issue this is. (Nothing is going to be done, but we are still following it?) Meanwhile, I know that if the ASD doesn't close with my other daughter, she will need surgery. I obviously want a second opinion before either of the girls have surgery/ don't have surgery and it is great to have a recommendation for another cardiology group! Even my pediatrician wouldn't give me a name yet!

Bartowmom, my daughter was born with a PDA too. Although her's was removed during the surgery she had as an infant, so it's not an issue for her anymore!

Here are some interesting articles on PDAs.

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/pda.htm

http://www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html

http://www.emedicine.com/PED/topic1747.htm

I think a second opinion is always a good idea. When it comes to your baby's heart... why not be proactive and explore your options? It would be interesting to see what another doctor has to say about your daughter's PDA. And especially since you are fairly sure your other daughter's ASD is going to require surgery anyway..... why not go ahead and get her with the doctor that will eventually make that call and oversee her during that time. JMO

Also, I forgot to include the link on the surgeons I mentioned in my last post.

http://www.heartsurgery-csa.com/
Click on "Our Surgeons" and you'll see their names (clickable links) under "Pediatric/Adult Congenital". Again this is info on the surgeons that perform pediatric heart surgeries at St. Joseph's Children's Hospital in Tampa and All Children's in St. Petersburg.... Dr. Chai, Dr. Jacobs, and Dr. Quintessenza.

Please let me know if I can be of any further help!

AngieT you have been very helpful to all of us moms. Thank you very much for your advice and information.

AngieT-
Thanks again for your advice. I actually spoke to another heart mom yesterday, who recommended the same group you use in Tampa. Her daughter had a very complex surgery through those doctors at All Children's and she agreed that they were great. I have to go to my pediatrician for a well-baby checkup next week and I will ask her to make the referral! Thank you again!

Bartowmom,

My son will be turning 6 on the 26th and he was born with an ASD and it unfortunately did not close up. He had the surgery done when he was 4 years old.

They were able to do it with the heart catherization through the groin with an Amplazer device. he spent one night in the hospital and they did another echo cardiogram and let him go the next day. We just had to keep him still for about two days and then he was able to go back to daycare, however we had the surgery done on a Thursday, so we had the weekend to keep him home. It was very hard to keep a 4 year old down

It is time for his recheck and his doctor from Jacksonville recommended Dr. Reich. I don't know anything about him, but I trust my doctor.

Just a note on All Childrens...we never had to use them personally, and I don't know specifics about any of the doctors, but I do know two very special little girls who received heart transplants at All Childrens and still receive follow up care there. Their parents are good friends of ours and love the doctors and care they recieved. We also have a relative who is currently at All Childrens waiting for a transplant.

We used Dr. Reich with my first son. Bryson was born at 38 wks and was in the NICU for a week. LRMC NICU didn't catch his hole in his heart.(his acid reflux, tongue tie or GI problems)but anyhow- I'm not sure which kind of hole it is but I do know that we have been seeing Reich since he was 2 wks old and is now almost 21 months. Dr. Reich has us doing echos on Bryson until the hole is closed completely. In November it was 2mm- we started at 5mm. He watches them to be sure they are closing and from my understanding depending on the spot they are in they may not need the surgery. Bryson's hole is beside his mitrovalve which is not hurting him- They usually look more towards surgery if "Clean blood is mixing with old blood" per say.
We went in November to St. Judes to do a pulmonary perfusion test- (scary... and since I was pregnant I had to stay out in the hall and hear him screaming!!!) If he failed the test he would have needed stints put in- But PRAISE GOD he passed the test and we have been told to follow up as needed to check to make sure the hole is continuing to close.