parentscornersubmission

Parents Corner Submissions:

SUMMER HEAT:

Does the heat of the summer seem to affect you or your loved one affected by a heart defect? Yes, heat in any way (to hot in the house, too) bothers our 5 year old son, with SVT and Einsteins.

What symptoms do you notice when the heat is getting to be to much? He complains of "flutters", sweating while in a cool place, crankyness, and he gets worn out easier then usual.

What are some ideas that you have tried to cope with the summer heat? We keep those ice packs that you keep in lunchboxes to keep sandwiches cool in our outing bags at all times, not going out on the days that is really humid and lots of care and support from our family that has helped since the day he was born.

Name:Vicky

Does the heat of the summer seem to affect you or your loved one affected by a heart defect? Yes

What symptoms do you notice when the heat is getting to be to much? My daughter who is five gets tired, run down, puffy and sweaty. The heat really does take a toll on her little body

What are some ideas that you have tried to cope with the summer heat? Keepig her inside with a/c and in a car with a/c. Hydration is important also and reminding her to keep her self relaxed and cool

Name:Stephanie T

LOSS OF INNOCENTS

Do you ever feel you have lost your mind just a little bit because you are always jumping to the worst conclusion? I absolutely felt this way especially when Zurik was first born. I know my family thought I was completely nuts those first few months who jokingly called Zurik "Bubble baby"...

How do you deal with it? When Zoe passed away at 5 years old after complications from what was hoped to be her last cardiac surgery I was still 7 months pregnant with my son and those last 10 weeks of my pregnancy were unbelievably emotional. I was so terrified that something was going to happen to Zurik too that I was literally in the doctor's office every week for stress tests because I thought he wasn't moving as much as he should. Every little illness he has had over the last 2 1/2 years I have always thought the worst and even with myself when I get a terrible headache immediately I think "brain tumor" or something absolutely horrible. Most of my fears have been unfounded, but when something does turn out to be true it just reaffirms my paranoia. Yes, I can say for certain that my innocence is gone... I deal with it by continuing to use "rational thinking", but I always have the attitude "Better safe than sorry" and tend to go ahead and get Zurik checked out if it will ease my mind.

Do you call the doctor instantly (like me) to have it checked out or do you stick it out a bit to see if it gets better? Yes, I do pretty much call the doctor immediately to make sure Zurik is okay.

Lastly, do you feel this “loss of innocents” is good because you are more observant or not so good because you are always preparing for the worst? I do think it is good. I truly believe when Zurik was diagnosed with Type 1 diabetes at 21 months old I was able to recognize that something wasn't right immediately and was told how unbelievably lucky we were to get him to the doctor so fast because he was close to going into a coma and if it weren't for my "Mommy radar" I'm not sure what would have happened.

Name: Tamara

I am a very low key person by nature so it takes a lot to get me worked up. I am more observant with my son Evan (who is my heart child) but I am not obsessive or jumping to the worst case scenario. Just the other day he threw up. This came on the heels of a tummy bug, a cold and the runs. My husband was trying to convince me to take him to the doctor but I didn't want to. I knew that all the doctor could tell me was that this was yet another virus that would have to run it's course. Evan was well hydrated and very alert so I felt very safe in not taking him in. Had he become lethargic I would have taken him in in a heart beat, but that was just not the case.

Name: Melissa

Do you ever feel you have lost your mind just a little bit because you are always jumping to the worst conclusion? I notice that since our son was born with a heart defect that I am always "pushing the panic button". If he sleeps a little longer for a nap or is a little more fussy, I always wonder if something is going wrong with him.

How do you deal with it? I usually call another parent and check the symptoms or I call the ER nurse line (even if I feel like a crazy parent just saying his non-symptoms :) Do you call the doctor instantly (like me) to have it checked out or do you stick it out a bit to see if it gets better? I usually error on the side of caution and call the nurse line first, I've found that a children's hospital ER nurse line always has very accurate information and they always error on the side of being checked out too!

Lastly, do you feel this “loss of innocents” is good because you are more observant or not so good because you are always preparing for the worst? I think it is a mixed blessing. I have caught many things early that needed to be checked out and my instincts were right on but I have also been acutely aware of other things that turned out to be no big deal.

Name: Gina

Do you ever feel you have lost your mind just a little bit because you are always jumping to the worst conclusion?

How do you deal with it? Taking a day at a time

Do you call the doctor instantly (like me) to have it checked out or do you stick it out a bit to see if it gets better? Depends on how bad it is!

Lastly, do you feel this “loss of innocents” is good because you are more observant or not so good because you are always preparing for the worst? It is good as you don't take everything for granted.

Name: Samantha

CHD AWARENESS

What other ideas do you have?get a team to go banger racing and paint the cars to help raise money

Name:Andrew E-mail:www.kerridgebeano@aol.com

What did you do to help raise awareness of congenital heart defects? Another group i belong to offered free stickers, ballons and brochers. I sent them to the daycare and the preschool my son goes to. It seem to be a great hit and hopefully it opened some eyes

What other ideas do you have?

Name:Tracy

What did you do to help raise awareness of congenital heart defects? I belong to a wonderful MOPS (mothers of pre- schoolers) group and they distribute a newsletter each month. In honor of American Heart Month and CHD Day/Week I submitted an article for the February newsletter. I had originally written it in such a way that included all of the CHD facts and statistics but I felt led to go another route. I ended up writing a letter to my CHD daughter which I had wanted to do but had not been able to since her birth. Instead of having all of the CHD facts, it gave the group a glimpse into the heart of a mother of a precious heart baby.

What other ideas do you have?

Name: Karen

Medial Assistance:

How do you cope with medical costs?

thankfully my husband in in the navy and the only thing we really pay for other than an optional

3dollars at walgreens to get his meds every few months, and the cost of travel to his hospital in

seattle. which is also optional! we could go to a military hospital but i refuse to let anyone but

the best see my son.

I have learned that the cost doesn't compare to my son's life....The bills get paid when the get paid

and most places are happy that we make an effort. After two open heart surgeries with in a year of

each other, I have learn unless I win the lottery it will take years to get them paid....so why get

upset about something I have no control over, instead enjoy the time I have with my son. Because

thats what's important

WE have double insurance and with 3 heart patients in the family, we've been hit very very hard with

bills. Some things are just not covered and the out of pocket costs add up for each person. it's

been extremely difficult but we have 2 CHD kids and a CHD mom with complications.

Have you found any special assistnace to help?

the military. i know it sounds lame but tricare is a life saver

Childrens of WI have been very patient and helpful in working out payment arrangement. And there is

alway the state aid if you want to take the time to fill out all the paper work

we haven't been able to qualify for assistance because 'we make too much money' however, they

don't realize that 1) I HAVE to work to keep the insurance and to pay the bills and 2) we have

THREE heart patients we are paying on.

The Flu Shot:

100% of those who participated in our flu shot polled said that they would get the flu shot for their heart children. Below are some of the reasons why:

Because any little illness can be so hard for our heart babies and the flu shot can help protect them and their fraigle immune systems. It would be shelfish NOT to get it.

Name: Jamie

My sister got a nasty case of the flu one year when she was small, and I can't imagine my CHD daughter

getting that as well...prevention for me and my family!!

Name:Somer

I have always been anti-shots, anti-doctors. After my son was born with a chd, Ihad to change my perspective. I got him vaccinatedat 3 1/2 months, something I never would have done if he hadn't had a chd. (I would have waited, but he was having surgery at 4 months). The same thing with the flu shot. If I was told that it would do more to protect my son, then I would do it. I would even get one myself if it meant protecting him. I've moved a

long way from my midwife and a homebirth to vaccinations and doctors...

Name: Marci

My child gets this shot every year. The small amount of reassurance it gives me that she wont end up severly sick and in the hospital is worth it.

Name: Stephanie

My sons pediatrician has explained that he must have the flu shot, and I trust his pediatrician completely. Im not sure how much a flu shot really helps but in my opinion, it cannot hurt.

Name: Suzy

I think it is important for heart kids to try and avoid and kind of respiratory illness especially kids that have had the Fontan. The lungs are crucial to Fontan circulation and anything that diminishes lung capacity is

detrimental to their health.

Name: Melissa

Feeding Issues:

I am a mom to a child with a heart defect.

What are some special, kid friendly foods to help kids gain weight?

Kid friendly yogurt, Peanut Butter, the Catnation

Instant Breakfast Shakes, even Pediasure (my son

likes the chocolate), ice cream, oatmeal.

Is there anything that has worked for you? If so, what?

I add powdered milk to a lot of things, like

mashed potatoes, etc. Using whole milk instead of skim milk.

Lisa

I am a mom to a child with a heart defect.

What are some special, kid friendly foods to help kids gain weight?

Avocado, mac & cheese

Is there anything that has worked for you? If so, what?

Our GI doctor had us cut out all liquids except pediasure and water. My son gained two

pounds in two months by doing this.

Valerie

I am a mom to a child with a heart defect.

What are some special, kid friendly foods to help kids gain weight?

I would like to know this because I am a mother of a CHD infant who is 5

weeks and having feeding issues. If there is

anyone that had this going on please let me know.

Anna

E-mail: annah1976@hotmail.com

I am a mom to a child with a heart defect.

Is there anything that has worked for you? If so, what?

I was using MCT oil (77 cal per 2 Tb), but it is very expensive ($40 for 8 oz). So I

switched to Heavy whipping cream. I add it to my son's milk. It is 50 cal per Tb. and it doesn't

taste bad. Cost is about $3 for 12 oz.

Jodi

Potty Training:

I am a mom to a child with a heart defect.

What advice do you have for other parents who are facing this milestone in their childs life? We potty trained our son right after he came home from his Fontan, on a large dose of Lasix, twice a day. He did great and honestly after 3 days was 100% potty trained, with the exception of over night if he fell asleep soon after his dose of lasix. I am glad we did it when we did, I think the lasix actually helped him train since he had to go more often, it was being thought of more often. GOOD LUCK!

Kim

I am a mom to a child with a heart defect.What advice do you have for other parents who are facing this milestone in their childs life?Josh was nearly 4 before he was potty trained. I believe it's harder for kids on lasix. Mainly just after it's given to them. My advice is to

just have patience, and take them to the bathroom often after giving them the lasix.

Lisa

I am a mom to a child with a heart defect.

What advice do you have for other parents who are facing this milestone in their child's life? My son is only on lasix 1x a day every other day, but I found it to help getting him trained. One day I gave him his lasix waited about 10 mins sat him on the potty and he just went. I made the biggest deal about it clapping and what not. In my experience I think the lasix really helped, but again he is only on it every other day.

Tonya

I am a mom to a child with a heart defect.

What advice do you have for other parents who are facing this milestone in their childs life?First of all it is important to make sure the child is ready. Can he or she sit on the potty chair with no pants comfortably? Does he or she say words to describe the sensation of going to the bathroom such as potty or "poo-poo"? Does he or she wake up dry after naps and in the AM? If yes to all of these potty training on Lasix does not have to be hard. In fact my Ped. Cardiologist recommends to potty train while on Lasix because of the predictable nature. When I potty trained my daughter I did all I could to make sure she was comfortable and ready and then used three days to train (preferably a weekend if you work). Every 30 minutes I sat her on the potty chair to go potty for three days. With Lasix you can almost time when he or she will go the first time after the

medication is given, so this method is very effective. I kept my child in underwear and we

only missed the potty twice (so outside time in the summer is a great time to do this method). By the third day my daughter had gotten the idea and was successfully potty trained with few accidents for the next few months. Like I said the predictable nature with which these kids void after Lasix administration makes this actually a good time to potty train. Good Luck!!

Angela

Mom of Antoniea Tennis, Double Innlet Left

Ventricle with Ventricular Septal Defect & Atrial

Septal Defect, Glenn repair 3/2003, Fontan repair

6/2006 (fenstration removal planned six months

post-op).

Sleeping Issues:

When did the sleeping problems start? At 6 mos, right after surgery for TOF repair. Before surgery she slept too much!

What have you done to cope with sleepless nights? She sleeps with us and she went back on the bottle when her brother was born (she was 16 mos) and she had become very dependent on it at sleepy times especially at night (she is 2). On a typical night she will wake up every 1.5 to 2 hours and just scream. I have noticed that the nights are

worse when her asthma or allergies are acting up. The older she gets the intervals have gotten longer.

What have you done, if anything that seems to help? Sleeping with us, I don't know if this helps her or if it helps us not have to physically get up out of bed to comfort her. Also that dern bottle unfortunately helps us all to get through the night.

Krista Conners

I am a mom to a child with a heart defect.

When did the sleeping problems start? birth

What have you done to cope with sleepless nights? massage, relaxing music

What have you done, if anything that seems to help? massage

Tina

I am a mom to a child with a heart defect.

When did the sleeping problems start? Since we came home from the hospital after 1st Surgery. 15 days old

What have you done to cope with sleepless nights? The only solution I had was to have him sleep in the bed with me.

What have you done, if anything that seems to help? He is now 20 months and I have switched him over to a twin bed. He seems to at least make it through half the night, sometimes all night. But does ocasinally end up in my bed. But he always has to be asleep first before i put him to bed.He will not go in it by himself. My son never slept in his crib. You would put him in it and he would instantly cry, to the point that if i didn't get him out of it he was cry till he threw up... He slept briefly in a basinet after surgery but that didn't last long either. At a year old i just put him in a regular bed which helps a little. But it definatly has been a problem. He was hopitalized not to long a go with pheniomu and they put him in a crib bed.....one restly non sleeping fits all night and i had them

bring a regualer bed in for him to sleep in.

Tracy

I am a mom to a child with a heart defect.

When did the sleeping problems start? birth, he never slept till the night till he was almost 2 and even at 10 he still no matter how late he is up wakes up super early..or shall i say at least 90% of the time.

What have you done to cope with sleepless nights? now he is old enough to get up and play video games or watch a movie till he falls back asleep

What have you done, if anything that seems to help? make him come get in bed with me in the early morning hours and do not let him turn the tv on

Kelly

What would you like to tell someone affected by congenital heart defects ....

I am an adult living with a heart defect.

What I have learned most is .......(1) Never treat your child as disabled. The one thing children crave most is to be normal. allow them to be children. (2) I have also learned in my life is to never hide things from your child. My father never allowed the doctors to address only my parents. I was to be addressed as the patient always. (3) If your CHD child has siblings treat them all the same. Sibling rivalry is natural and doesn't need any external help. There are dynamics created in families that can last a lifetime.

Jessica age 31

Tricuspid atresia Potts Shunt & Blalock - Hanon 1974 Fontan 1984 Lateral Tunnel Fontan 2001

I am a dad to a child with a heart defect.

i'am a father of three kids born with heart defects frist was born in 1978 and 1979 and 1983 they all have differt defects. the best thing some one can do is not give up also there is always hope

I am a mom to a child with a heart defect.

What I have learned most is .......Lots of things. I have learned that no two heart kids are alike. You never can compare. You can get ideas of what to expect from other people. I have learned that you always need to ask for a tour of the unit where your child will be after surgery, so you know what to expect. I have learned that seeing a kid right after surgery is the worst thing I have ever seen. I have learned that you need to be your child's advocate, no one else will. Most of all, I have learned that if I could go back and change things, I wouldn't!

Lisa

I am a mom to a child with a heart defect.

When I first learned about CHD's I was heart broken, devastated, mad, scrared. We had a 6 year old daughter and had 1 miscarriage. He was the blessing we had so longed for. And now this..What had I done wrong. I was devasted because I didnt know anything about this type of problem..I was mad at my doctor for never doing a second sonogram. I was thankful for Dr Cumming, Dr Hospers and Dr Shrini (excuse the spelling) and all the staff at the Womens and Childrens Methodiest Hospital in San Antonio TX.

Michelle

I am a mom to a child with a heart defect.

Our daughter was born with Truncus Arteriosus after a normal, uneventful pregnancy. The only indication that something might be wrong was at a routine ultrasound where the doctors saw what they thought was a "shadow" over the fourth chamber of Olivia's heart. Another ultrasound was conducted and it was determined that there wasn't any problem. I'm actually sort of glad that I didn't know about Olivia's heart condition - it definitely would have put a ton of stress on us. On the other hand, had we known, we would have had time to research, prepare and get used to the idea that our life was about to change DRASTICALLY! We were first time parents and only 25 years old. Very naive, to say the least. After Olivia was born, I thought my only problems were learning how to nurse and lack of sleep. Then - the pediatrician came in and told us that Olivia had a pretty loud heart murmur and would need and echocardiogram. They did the echo the same day we were to be discharged. The technician did not let on that anything was wrong - the doctors discharged us as normal, and we went home, thinking only that our daughter had a heart murmur and would need antiobiotics before dental procedures. She did have a touch of jaundice and needed to have the bilirubin test done daily at the hospital's lab until her numbers returned to normal. Olivia was three days old and we were at the lab for the test, when one of the secretaries called me into the back room. I had a telephone call. I still do not know how anyone knew we were at the lab- I didn't have an appointment. We just happened to be there at the time. It was a pediatric cardiologist from Buffalo. He told me that after Olivia had her blood drawn, I'd need to go home, call my husband to come home from work, and then head to his office. He insisted that it was not an emergency, but I knew he was telling me that only to try to keep me calm for the drive home. Calm I was not - my grandmother was with me - she knew they had called me into the back, and figured that something was wrong. She kept asking to see me, and when they finally brought her to me, she said I was as white as a ghost. To this day, I don't know how we go home that day. I don't remember driving at all. I don't remember much of anything until my husband got home and we bundled Olivia up to see the cardiologist. It seemed like we waited hours at the office. Really, I think time just stood still. When our name was called, we were taken into a conference room with a white dry-erase board. We waited a few more long minutes until finally, the doctor entered the room. He introduced himself, told us that he had taken a look at Olivia's echo and that he was concerned. Then he said that some children are born with little heart defects and they go away on their own, but that it wasn't the case with our daughter. He got up and drew a picture of a normal heart - and then he drew her heart. I burst out crying when he told us about the rarity of the defect and that she would not be able to have surgery in Buffalo. Only 4 cases on average are found in this area per year, and she was one of them. He told us about our options, and he told us that Olivia would be okay, but that she would have to overcome lots of hurdles and obstacles along the way. We went home confused and scared. We decided that best thing to do would be to do our own research and find the best surgeon to do the surgery. The information on the internet was frightening to me. I started to realize that our daughter might very well not survive her operation. She was tiny and she was beginning to breathe rapidly. It was getting more frightening everyday. I prayed each night for God to spare our daughter - made lots of promises that I would keep if I got to keep and raise her. I cried constantly and didn't want to see anyone - not friends, not family - nobody. I lived in my own little hell for six weeks. My husband handled things better - at least on the outside. He took over the researching and handled our concerned family. We decided, after several recommendations, to take Olivia to Childrens Hospital in Boston for the surgery. We spoke to the surgeon who'd be operating, sent the echo for him to look at, and waited... waited for Olivia to almost go into heart failure. That, according to the surgeon, as scary as it seemed, was the right time to do the operation. We went to see the cardiologist in Buffalo on the Monday of Olivia's sixth week of life. I froze as he said, "It's time - make the arrangements. Olivia needs to have her surgery very soon." We went home. My mother-in-law immediately went to work getting travel plans together. The hospital in boston scheduled her surgery for Friday, and said we needed to be there on Wednesday for pre-op. It was Monday... it was a whirlwind. We called the priest at our church who offered to baptize Olivia the next day, before we left for Boston. We packed, and again, I remember hardly anything. Our entire family went...grandparents, parents, sisters, brothers. We had a huge support system which is probably the only reason we didn't go crazy. When we got to Boston, we dropped our things at the hotel and walked right to the hospital. They checked Olivia in at 10:30 pm. They immediately started working on her. After an hour or so, the family heeded to go back to the hotel, and we were told that only one of us could stay with Olivia. I wanted to stay, so my husband went back to the hotel. I wanted to spend as much time as possible with her because I was terrified that she would not survive. I even told myself, in my fragile state of mind, that if she didn't live, then I wouldn't continue living either. I remember my husband syaing that the word "live" is in first name, and she would definitely live. The next day came and went, test after test, and Friday morning came upon us. Her surgery was scheduled early, so we got up early to spend time with Olivia - she was not allowed breastmilk after 4am and she was angry and hungry. It broke my heart not to be able to nurse her when she wanted me so desperately. At around 6am, the nurses came to say it was time. Together, we pushed Olivia's crib through the hallway toward the elevator. Then it was time to say goodbye. I don't how how we did it - let them take her. I remember thinking that it could be the last time I'd hold and kiss her. I cried and cried. We waited in the surgical waiting room where we had hourly updates. Our hearts stood still as we awaited the first update. "Olivia has been sedated, and she' doing fine," was our first update. Then "Her chest has been open... she's on bypass." Then I got scared... I started disappearing when I thought the nurse was coming to talk to us. I knew she wouldn't give any information to the family without me there, and I didn't want to hear any bad news, so I left. But I did have to come back. The updating nurse came in and said, "The operation was a success - Olivia is getting stabilized and you'll be able to see her shortly." It was hours before we got to see Olivia. Whe we did, she was bandaged up and we could only see her nose... she was pitiful, but she was alive! We were overjoyed! The nurses in ICU were so attentive and nice... we knew our little girl was in good hands. As the following days went by, Olivia got better and better and was taken off the vent. Then, I got to nurse her. She never missed a beat - she nursed right away... at that point, they put her in the step-down unit. It was Thanksgiving Day. We sure had a lot to be thankful for! After three days in the step- down unit, we were discharged to the hotel and were able to fly home the next Monday. The rest is history - but fresh in my mind just like it was yesterday... Olivia is five years old now, in kindergarten, and just had her second surgery in July 2005. She is a trooper - such a strong, special girl. Sure, she has hurdles and obstacles, but there hasn't been one so far that she hasn't been able to overcome. And we have learned so much about the important things in life, the value of family, and not to wprry about stupid little things that can't be changed. We grew up - two 25 year olds with their first baby. And we are different people - and we wouldn't change a thing.

Adrienne

I am a mom to a child with a heart defect.

When I first learned about CHD's I .......I was alone in my hospital bed, exhausted from just giving birth to my daughter. My husband left for lunch and the nurse supposedly took my daughter to have a bath in the nursery. Soon a physician entered my room and began talking about a serious heart condition my baby had, but they were unsure of the diagnosis. The hospital was sending some tests to a children's hospital which was two hours away. My throat was swelling shut. Tears were filling my eyes. Why was I alone! The minute my husband entered the room, I began crying and didn't stop until six weeks later when my daughter was on her way home from having open heart surgery. Until then I had been so afraid that my daughter would die despite the fact that the doctors said her condition was correctable! Finding information and support was a great challenge. Some of my friends were able to give me two names of mothers who had gone through open heart surgery with their daughters. This support was so helpful! I am so thankful for the support that these mothers were able to give me. In return, I try to offer support to others facing this CHD roller coaster!

Penny

I am a mom to a child with a heart defect.

When I first learned about CHD's I ....... was scared, Jack was only a few hours old and we were overwhelmed with news that he had turned blue in the nursery, had a loud heart murmur, and had to have an NG tube because he kept falling asleep in the middle of feedings. They did an echo at the hospital and found that he had aortic and pulmonary stenosis. It was a helpless and alone feeling, and not what I had pictured my first few hours would be with my newborn baby. But with time comes healing and understanding and acceptance and that is exactly what I feel now when I think about everything that Jack has been through.

Evie

I am a mom to a child with a heart defect.

When I first learned about CHD's I ....... was just out of control. It was about 20 hours after he was born. I was still recouping from a C Section and they came in to tell me there where transfering him to children's hospital and i could not go with him. They told me there was a problem with his heart that they could not fix here and it was serious. He had to go NOW. I was scared, frightened and i think most of all i was so scared that he would would pass away on the way up there and i would not be with him. When we finally got to childrens and they actually explained that he had an interupted aortic arch and a bas valve. I felt a small bit more relieved that there was a name to put with the problem, but it was still life threating. Thing have gotten better, he is now a year old. Still a child of CHD. Unaware of what or when the next problem will happen again, But we have learned to live with with it and take it day by day I do still think on a daily basis, how long i have to spend with my son. And what it is going to be like with the next surgery. But I guess that i part of being a CHD mom.

Tracy

I am a mom to a child with a heart defect.

When I first learned about CHD's I ....... was just entering my 27th week of pregnancy when I went to an OB appointment for a sono. I had been to the OB for a sono mid-October. Because my baby moves around alot when having her photo taken, they asked me to come back at the end of November. That is when I found out that there could be something wrong. They sent me to Pittsburgh 3 days later where the diagnosis was confirmed. This is my fifth pregnancy but will be my third child. I didn't know what to think when I heard that our baby had TGA (Transposition of the Great Arteries). I was extremely scared after just having a miscarriage in May. I had no clue what would be in store for all of us. I am now grateful that it was caught before birth, but the waiting is agonizing at times. I have another two months before she will be born and have to go through open heart surgery. My life seems to be an uncertainty as to what is going to happen after birth in her life and mine. I will be traveling back to Magee Women's Hospital in Pittsburgh January 4 to talk to the cardiothorasic surgeon and neonatologist. I have so many unanswered questions right now and hope to get those answered when we go to Pittsburgh. I can only hope for the best at this time.

Sharon

I am a mom to a child with a heart defect.

When I first learned about CHD's I ....... did lots of research about heart defects. I then discovered that there was nothing in any medical book to describe my son's multiple heart defects.

Yvonne

I am a mom to a child with a heart defect.

My daughter was less than 24 hours old when I found out about her CHD. She was diagnosed with severe aortic stenosis and had a valvuloplasty when she was 4 days old. At first I was in denial. It wasn't until right before she went in for surgery that I realized that I could lose my little girl. It was horrifing. She is now almost 2 and doing wonderfully. The problem that I have now is worring about her health and every time she has a symptom that may be related to the CHD I panic. I know that she will eventually have to have that valve replaced and it scares me to death.

Lisa

I am a mom to a child with a heart defect

When I first learned about CHD's I was devestated. Tetralogy of Fallot, what??? The first day I told everyone that he had Textalogy of Fallot, I was a mess! The thought of something like this happening to my baby had never crossed my mind. My baby was

just hours old and they were transferring him to a childrens hospital across town. I immediately checked myself out and went and sat holding my precious little one's hand thinking why me? That was 2 years ago now. At times, I feel I am an expert, I wish I didn't know sooo much b/c it can take over my thoughts. My little one has endured 1 heart cath. and 1 open heart surgery and will be going through another cath. soon. He is an absolute miracle and blessing, we know we are lucky to have him and are very thankful for the dr.'s and interventions done to save these beautiful lives.

Sarah