My son has Aortic Stenosis

Mariam - posted on 02/18/2013

Hi I have a daughter with arotic stenosis to I am always worried about none stop every six months she needs to see a cardiology the docter tells me it's mild for now I know in the long run she will need more than one survey. She is so active some times I'm in denile I'm just so worried what the future will bring do kids that have this live a normal life?

Allison - posted on 02/11/2013

My son also has AS. He had his valvuloplasty done at 6 days old. His procedure was successful, but during the process the cath nicked his heart and caused him to go into cardiac arrest...however, he is pefectly fine now! He too is healthy and active and you'd never know! We actually have an appointment tomorrow where we will find out if he needs his valve replaced sooner than later. :( NOT looking forward to this surgery. I'm like you, I know it has to be done at some point... I just hate it! He will be 2 on February 23rd and I just feel like he is still a baby...open heart surgery is so frightening. I'm with you! You are not alone!!!

Katie - posted on 12/22/2012

Hi Natalie... for some reason I wasn't notified by email that you posted a response! Did you have the twins yet? Either way, hope you all are doing well! Glad my first post made you feel better. It is amazing what doctors and surgeons can do! My twins were 32 weeks...daughter weighed 4'11'' yet they did that surgery on 3 day of life. Incredible. Saved her life.

Sara - posted on 12/22/2012

Hi my name is sara iam 18 years old and i have aortic stenosis.i recently had a heart attack last year . i was supposed to be a mother but i couldnt because if i live through my pregnacy i would die or my baby would.have come out with problems. i really wanted to keep my baby but i new it was the right thing to do. But so far am doing pretty good still taking medication.sobibassure u ur kid will be fine :)

Natalie - posted on 11/09/2012

Hey Shanna,

Actually your story does make me feel better! It gives me hope for the future. We had our appointment with the cardiologist on Monday and it turns out that the little guy has coarctation as well. The Dr isn't sure how serious the AS is, as in, he doesn't know if it will need the balloon as soon as he's born like they thought, but I don't know how soon they work on the coarctation or if they'll do them both at the same time. He wants to see us again on Dec 10th to check how it's all developing. He still couldn't get a great view and told us he wouldn't really be able to diagnose the severity of it until they were born. He also said he would like me to get to 38/39 weeks, but I honestly don't think my body has that long left in it! I'll be 30 weeks on Sunday, I'm aiming for 35/36. I'm measuring about 38 already! How far were you with your twins?

Again, thank you for your reply. It made me feel much more positive about what they can do for our tiny babies.

Kimberly Grace - posted on 11/08/2012

My 16 year old daughter Emilee (turning 17 nov.19th!) has it, and she is playing two varsity sports. Soccer and softball, she is doing wonderful. We bring her back to a big hospital about 4 hours away once every couple months, and she gets blood drawn every couple weeks at our nearest hospital. She gets ecg testing, heart monitors, and such. Your son will do great!

Gemma - posted on 11/06/2012

hi,

just joined. my little girl was diogonised with critical aortic stenosis at birth. she had bollon procedure at 3 days which was succesful. first six months were difficult due to infections, feeding tube and kedniy failure. but she has frived since then. my concern is her weight and growth does anyone els have issues with this. she is going to have ross procedure which is terrifying.she has come of all meds apart from cat. she is coming up 20months, and only weighs 18lb? if you saw her you'd think there was nothing wrong with her. she's a bright little girl. she has echo on friday so will up date then. xxxx

Shanna - posted on 10/26/2012

@Natalie...I know what you are going thru..I had boy/girl twins and at 32 weeks they saw a problem with my daughters heart. A cardiologist was waiting at the hosp for her to be born. She was checked immediately following birth. Dx..aortic stenosis, coarctation and VSD. She was transported to a children's hospital within hours and had open heart surgery less than 2 days later to patch the VSD, put a stint in the aorta and repair the valve as best they could. She and her brother are now 8, and she just had her first catheterization. She has severe AI, and needs valve replacement surgery within the next year or so. I know my story probably doesn't make you feel better, but the only advice I can give is to live 1day at a time and try not to stress over the future. My daughter is the sweetest little girl...she cares so much about everyone else before herself, and never has a mean thing to say. I think that all that she has been. through has made her who she is, and although I very much wish she was healthy like her brother, I wouldn't trade her for the world. I wish you the very best with your twins and hope they are healthier than the doctors think! It is so much fun to watch

them grow together and see the amazing bond between them!

Natalie - posted on 10/25/2012

Hey, I'm 27 weeks pregnant with boy/girl twins. When we had our 24 week scan done I didn't like how much time the sonographer was spending on our baby boys heart. That was a Friday. On the Tuesday I went to my obstetrician appointment, slightly concerned about our baby girl, after the sonographer told us she didn't like how little fluid was around her. My OB told me that the fluid was a little low, but nothing to worry about, then told me that they had noticed something with the boy's heart. My stomach turned and my heart sank. I watched him write some letters down on my referral to the cardiologist, which he faxed away without giving to me. Of course when I got home I googled the few things I could remember. LVOT. We met with the cardiologist in Sydney a week later, and he confirmed a diagnosis of severe Aortic Stenosis, with the potential to turn critical. He advised us that the baby's best chance would be to be delivered at the Children's Hospital at Westmead, a 2 and a half hour drive from our home. He also arranged for us to see another cardiologist in 4 weeks... which will be when I'm 29 weeks. As the baby's heart will be bigger and hopefully he won't be facing back out so they will be able to see things more clearly. I am so scared how I'm going to handle everything that is going to happen when my babies are born. How am I to deal with a critically ill newborn plus another newborn AND a 2 year old at home, who will be staying with my sister while we're all in Sydney! Apart from the fact I have no idea what to expect with the operations and life long challenges we will have to face! I have a thousand questions for the cardiologist about what is going to happen, but is there anything in particular I need to ask? At the moment they are talking about a balloon valvoplasty unless the condition worsens and then it will mean open heart! I needed to talk to people who have been through this "heartbreaking" time!

Deborah Ridgely - posted on 10/19/2012

I know this reply is pretty late, but I hope to encourage you as a mom and your son as a patient. I was born with AS and had two surgeries so far. A valvotomy (open heart) when I was 8 years old and a valve replacement at the age of 40. I am now 42. It is amazing to me the difference in technology and procedure between the two surgeries and with preparation and follow up. Great medical advances have been made. I have given birth to three children, none of which have AS, fortunately. I have a lot to be thankful for, and this congenital birth defect has drawn me very near to God at many times in my life. I hope that you are encouraged by this, and I will pray for your son. As far as activity, I was in Cheerleading back in Highschool, I have been able to do aerobics and weight lifting, and after this last surgery I went through Cardiovascular rehab, and now I do walking and Taebo. Diet is also very important and medicine if necessary. Getting excellent doctors is important, too. Low stress makes a difference as well. I will be praying for you all on here who have a child with this problem.

Candice - posted on 10/17/2012

I just joined this group. My son was born with a bicuspid aorta valve which has now caused aortic stenosis and a dilated aorta. He's 4 now and we just came back from his annual visit and found out now he has aortic insufficency as well. His cardiologist is more concerned with his enlarged aorta than the valve itself. I hate this "waiting" game, waiting for things to get worse before they'll fix his problems. I always expect the worse and freak out. How do you all deal with this?

Gina - posted on 10/15/2012

Hi! My son was diagnosed with a bicuspid aortic valve at age 3. My husband had same thing - diagnosed with aortic stenosis as a child. He had the Ross procedure done & is doing well. We are tak

Stacy - posted on 08/25/2012

It's two years later and now I am in the same boat you were.

Stacy - posted on 08/25/2012

I don't know if this is still active, but my daughter was born two Weeks ago with AS and AI. She also had to have the balloon procedure at two days old. I'm feeling the same way. I am constantly worried about her and feeling intense grief over the things she will not be able to do in life (as she has a very severe case) and over the hardships she will have to endure as a result. Does anyone have any kind of advice???

Michelle - posted on 07/23/2012

My son too was born with a congential heart defect (aortic stenosis). When he was born the doctors did such a poor job of checking his vitals that they missed the very detectable heart murmur. We were in the hospital for 6 days due to my son being critical jaundice. When he was 3 days old, the doctor on call noticed the murmur and ordered an echocardiogram to be done. The doctor who ordered it didn't indicate that it was a high priority so the hospital sent us home 3 days later and told us to come back in a week as outpatients for the echo. When we came back the admininstration desk went over my sons information and they had the wrong doctor in their system. I asked them to change it and they refused. A few weeks later at a routine check up with my GP, I asked wht the results were on the echo. He stated that he hadn't received any results and didnt even know he had an echo in the first place! He called the hospital, got the results and sure enough, it showed that the aortic valve was narrowed. He referred me to a pediatrician. After a week I called my GP's office to see if the referral had been sent and they said it had and to give it a week or so. 2 weeks later I called the pediatricians office to see when we would be getting an appointment. They indicated they had never received a referral and I would have to request a new one and then added that I should go somewhere else because they were booking 3 months from now. I called my GP's office in hysterics and an hour later my doctor called and said I would meet with the pediatrician in 2 weeks. In the meantime, my son was not gaining any weight, we had to stop breastfeeding and switched to formula. A week later we went to a medi-clinic close to our house as we were concerned about my son's breathing. His stomach was caving in when he breathed instead of expanding out. The doctor there told us that there was nothing wrong with him and we have a "happy, healthy, active baby". Three days later we went to my GP cause the answer we got from the medi-clinic didnt sit right with us. We were immediately sent to a different pediatrician who told us that we had a very sick baby and he needed surgery immediately. He called an ambulance and we were rushed to the hospital. We were told he had aortic stenosis and if he didnt come into the hospital when he did, there was a very real chance he would not have survived the night. The next day we were sent to another city where they did a balloon catheterization. We were there for 1 week while he recovered and they did further testing. That was 3 months after he was born. He is a year and a half now. He has met with the pediatric cardiologists every 3 months for an echocardiogram. He has had 2 more balloon catheterizations, one in Saskatoon, SK and the other in Edmonton, AB. They continue to monitor him every 3 months and will do so for many years to come. We have been told that if the valve narrows again, he will require open heart surgery and he will need a complete vavle replacement sometime in the future. It has been an exhausting year and a half and I am so frustrated with the health care system, the amount of times we fell through the cracks and how many times things were missed or overlooked. You would never know by looking at my son that he has a congential heart defect and that he has had 3 surgeries. He is a very active, bouncing child and has reached all his milestones ahead of schedule! I didn't realize how many other families there were out there that are going through the same thing. It's nice to know I am not alone, however, it's terrifying to know that this is such a huge problem.

Lisa - posted on 06/10/2012

my daughter has aortic stenosis she was diagnosed at birth .when she was one and half she had a ballon op she is now 5 and is now on meds for her heart she will need a valve replacement in the furture,i do trulley understand how you feel its so hard sometimes xx hope all works out for your son .

Aisling - posted on 03/28/2012

My son was diagnosed with moderate aortic stenosis a couple of hrs after birth. He is almost a yr now and has been monitored every few mths. I was told today that he may need a valvoplasty in next couple of yrs. I'd like to hear from anyone whose child has undergone this procedure, what it entails, length of stay in hospital and recovery time. Hard to get my head around because he is such a bouncing boy with no outward signs at all.

Mary - posted on 10/30/2011

Hello, my name is Mary and my husband and I found out last week that our 4 year old daughter has Aortic Stenosis. I am so lost, why are they just now picking this up, has it been there all along or did it just develop. She has asthma as is always at the doctor at least once every 3 months just don't understand how it has been missed. They want to monitor her for 6 months but if they didn't hear it 3 months ago and now they do are we waiting to long to do something. I am just scared..:

Mary - posted on 10/30/2011

Hello, my name is Mary and my husband and I found out last week that our 4 year old daughter has Aortic Stenosis. I am so lost, why are they just now picking this up, has it been there all along or did it just develop. She has asthma as is always at the doctor at least once every 3 months just don't understand how it has been missed. They want to monitor her for 6 months but if they didn't hear it 3 months ago and now they do are we waiting to long to do something. I am just scared.

Tara - posted on 09/21/2011

HI ladies. My name is Tara and My son was Dx at 1 yr with AS. We have been blessed tho as he has had to tx needed thus ar. Just close watch by Ped Cardi dr. The only thing I with our 29 month old is that he tends to sleep more then children hisage which the cardio says is "normal". For those of you with older... have any of them went on to play sports? I look forward to being a part of the group. :)

Kimberly - posted on 09/17/2011

We get it! I did/do all those same things. Knowing the hospitals,etc. It isn't fair and it is frustrating that you can't do one damn thing to change it. I have learned over the yrs as now both my kids have more and actually more serious life-threatening conditions that you have to take care of yourself or you will not be able to care for them. Things you can change...go for it. What you can't then you have to surrender it whether it be to some higher power or for those not religious.....you put that item in a box/lock it and put it on the back shelf out of sight and out of mind. You focus on being your child's teacher and mentor and the only thing they need is your love and attention. You concentrate on that and you will be so busy and distracted it will help with some of the worry. I have my moments believe me but it's the hand we have been dealt and everything happens for a reason whether we know why or not. Keep your chin up and communicate with others including your hubby.......he is most likely having concerns/thoughts as well and not sure how to express them either. support each other/communicate. =) Kim

Esther - posted on 08/11/2011

Hey everyone! I don't know if anyone still looks at this conversation, but I found it, and needed to vent. My son was born in July 2010 4 weeks early. Shortly after he was born his heart rate shot up to 300 bpm, which lead to an ultrasound of his heart. When I heard the words, Aortic Stenosis, I had no idea what to expect. I was told that it was a moderate case, and that we would just have to see the pc monthly. Two weeks after coming home, we went to our first appointment with the pc, after doing an ultrasound and echo we got the frustrating news that he was progressing quickly, and that we might have to do a valvoplasty within the next month. I prepared myself for the next appointment thinking that it would be bad news. Surprisingly, my son had improved slightly, so we have been playing the waiting game for the past 10 months back and forth to the dr, with slight improvments, and then a decline. At the last appointment almost 3 months ago, the pc said that he thought we would need to schedule the surgery at my next appointment, which is less than a month away. My son is so beautiful and loving, I just dont understand why this is happening to him. It makes me so angry that I can't do anything for him, i can't even try to explain what is happening to him, bc he is only 13 months old. It just isn't fair. So, as i sit here at 12:20 am on a thurs night alone at my computer, wallowing in self pitty, I just need to remind myself, that things could be worse, and that my beautiful, loving baby, is going to be just fine after he is treated. Although I don't look forward to surgery, obviously, I know that it is what is best for my son, and I just don't wanna play the waiting game anymore. I hate that i always need to know where the nearsest hospital it. I hate that I carry his medical records with me, no matter where i go. I hate that im leaving for vacation in 24 hours, and i chose my vacation spot based on the nearest hospital. I just want my son to be able to do whatever he wants in life, and it scares me to death that this could potentionally hold him back. I am sorry for venting, but in my household I am the rock, I listen to everyone else with a strong shoulder to cry on, I have never even expressed this much worry to my husband, in fear that he will worry more. So, here I sit late at night at my computer, venting to a page that no one even looks at anymore, but, I feel a slight weight lifted off of my shoulders. Thanks for reading, if anyone did =)

Carla - posted on 09/23/2010

I found out when my son was 3 that he had a murmur so bad the doctor thought he had a whole in his heart. Thank God, he only has aortic stenosis, and a bicuspid valve. Thankfully, we have not had to go through any surgery to date. We found out last year that there is a minimal amount of leakage, but not yet alarming. It was enough, however, to start limiting the things he can do. He is now only cleared to play soccer, swim, run track, and take low levels in gymnastics. I cannot imagine being one of the parents whose child had surgery at all, let alone so young. My heart goes out to you. I have a question to ask, if anyone can answer, I would appreciate it. I did not know that my son had an enlarged aorta, so when I questioned the doctor, she informed me that having an enlarged aorta is common...did you know that/do your children also have an enlarged aorta? And as for the worries, I try to do well with them, but I tend to err on the side of caution. I keep gatorade on hand when the weather is hot/humid, send it to school and summer parties, and also when he is sick. I also have a nebulizer and xopenex (sp?) for when he gets a cold or bronchitis, and I always question any antibiotics or other treatments he may need. It's tough because I don't want him to feel like he is "different" from everyone else, because while he is, he isn't. And now, he needs to be tested for all kinds of things like thyroid problems and other health issues because he is displaying signs of hyperactivity without signs of attention deficit, and also for asthma and apnea because he tires easily....does it ever end, and have any of you ever experienced any of this? Thanks all. Blessings to you and your families :)

Krissy - posted on 02/10/2010

My son was born with Hypoplastic Left Heart Syndrome and Aorta Contraction. As he got older, he did get Left Vein Pulmonary Stenosis. Zachary earned his angel wings on 12/8/08. He would be turning 2 on Friday Feb. 19th.

Aimee - posted on 01/27/2010

Hi Beverly. It is great to hear that your son is doing so well. You have a very encouraging story. My son seems to have a very similar story, but he is only 11 months old. He had a cardiac cath done at 7 days old, and did fantastic. He has not had any other procedures yet, and we are also hoping that he will not need anything done until he is an adult. He currently sees his cardiologist every 4 months. I worry about him constantly, and wonder how he will be as he gets older. He is otherwise healthy and you would never know that he has a heart condition by looking at him. These babies/kids really are strong!

Beverly - posted on 01/14/2010

Hello everyone. I just read all of your posts. I don't think that my son has the same heart condition as most of you, but he does have something similar. He was born Oct 2001 with aortic valve stenosis. He sees cardiologists every six months and the leakage in his heart has luckily remained between mild and moderate. We are hoping for him to get to be an adult before he needs his valve replaced. He has never had any sort of procedure for this. They caught the murmur in the hospital when he was born and we've monitored ever since then with cardiologists. He is an amazing athlete and this year made the traveling soccer team. I forget completely that he has a heart condition. I have people come up to me and tell me that pound for pound he's the toughest kid out on the soccer field. The few parents that I have told that he has a heart condition cannot even believe it. No one would ever know! All of you hang in there and I will keep all of you and your beautiful heart babies in my prayers!

Joanne - posted on 01/02/2010

Hi my daughter Mia had a Partial AVSD operation with she was 11 months old and when she was nearly 4 we discovered that she had Aortic Stenosis, which she had an operation to try and correct. They have got rid of as much as they can but she still has a slight narrowing and we are not sure if this will ever come back. The consultant has said that she may need more surgery to correct this if it comes back. We just hope and pray at her yearly appointmens that we don't hear the dreaded words "More surgery is needed".

Anna - posted on 09/25/2009

My 4 year old daughter was born with co-arctation of her aorta and has developed stenosis of the mitral valve. She had repair surgery at 30 weeks gestation, (born at 26 weeks, 2005), and a balloon dilatation at 40 weeks.She was the smallest child in New Zealand, at that time, to have repair surgery, weighing 900grams. She was discharged at 44 weeks with a booking six weeks later for another repair, through the front of her chest with the possibility of using a stent. She is now nearly five and surprising doctors every day. The surgery still hasn't happened, she is proving that the scar tissue can actually grow as she grows. She will need more surgery one day, hopefully not for a long time. She has her limitations re exercise, but is a very active child on the whole. We coped with the first two procedures, it was heartbreaking for me, but we got through it. We can do it again, when we have to. It's amazing the strength you find when you need to.

Katie - posted on 09/01/2009

Hello everyone... this is my first post. I think I have to start by saying that I have seemed to be so strong throughout my sons life because of denial. It hasnt really hit me yet, although its getting close to it. I just dont want fear to consume our lives. It all started the day Tanner was born. They said he had a heart murmur and they were going to do some tests, they werent alarmed and therefore my husband and I were not alarmed or very concerned. They still allowed us to take him home from the hospital that next day but had to have the pediatric cardiologist appointment set up asap. We saw the PC right away and he told us after the tests that he had Aortic Stenosis and it was a moderate case. We had to go back in a month to get it checked out, but he should be fine as long as the valve grew along with him. We thought he would be fine as it was mainly just a murmur and you hear about so many people living with murmurs. The second check up came and it was not good. He was severe and though we did not see any signs, we would if we didnt act quick. A week later at 2 months old he had a balloon vavoplasty done. He recovered quickly and the balloon was a success in getting him back to moderate state. They said they created some regurgitation and therefore probably would not be able to do another balloon if it came to it, it would have to be surgery. SO right now it has been two months since his balloon and he is still at the moderate level. Our doctor wants to see him every three months and says that he expects to have to do surgery at 1.5 to 2 years. He wants to do the Ross Procedure.

Since the time (Tanner is now almost 5 months old) has flown by, I have gotten the eerie feeling that the 1.5 year mark will sneak up on me and so I have started my research and it has been saddening. As I said it has not all hit me, but I have been reading the reality of everyone elses cases and its hard to sit here and imagine my little Tanner having to go through any of these surgeries. The balloon thing was so un invasive and he recovered so quick. He was only in the surgery for two hours. I already feel thankful to have found a support site and I look forward to getting to know some of you on here... especially if you know more about the ross procedure.

But for now... i feel blessed to get to concentrate on the simple things... he is learning to eat cereal now! We all must soak in all the little things and trust in God that He gives our little ones the strength to stay with us all!!

Aimee - posted on 08/01/2009

Thank you everyone for your support, and stories. From what I have read so many of you have been through what I have, and even more. You are all so strong to be able to get through what you have. I have been having a really hard time dealing with the fact that he has a heart problem, and that it will never go away. I feel like he is so brave even at such a young age, but he shouldn't have to be. I'm sure everyone has felt the way I am feeling at some point. I am just feeling like it isn't fair that such young kids have to suffer and go through pain when they did nothing wrong. My little guy is doing well, but it sounds like he may be needing another balloon done in the near future. Although I want him to get done anything he needs to make him as healthy as possible the thought of him needing another balloon or a valve replacement scares me to death. I know that things could be a lot worse, but I am still worried everyday that something horrible could happen to him.

Heather - posted on 07/26/2009

hi, im in england - my son finley was born with critical aortic stenosis .His had a balloon which did'nt work - he ended up having 2 open heart surgerys - the 2nd was to replace his aortic valve with his pulmonery and place a calfs valve into his pulmonary . He also has mitral valve regurge . he was so poorley he did'nt come home from hospital for 10 months - he had a trachiostomy, gastrostomy and was on a huge amount of medication! However - if you saw him now - other than the tell tale scars - you would'nt know he had a heart condition . He is the most enchanting , energetic and amazing little boy you could meet. I can't believe what we went through with him and its still on going but you learn to adjust and appreciate them so much ! Your little man will be fine , just be positive and things will improve . Fin has scans every 3 months and is still on medication but that is a small price to pay for this amazing little boy x good luck to you all - and be confidant brandon will be an energetic toddler with a personality able to cope with his condition - heart children are amazing !

Aimee - posted on 07/25/2009

Where is everyone from? Anyone from NJ?

Aimee - posted on 07/25/2009

We just found out that Brandon's valve is slowing starting to narrow more again. They are not ready to take action yet, but if his numbers continue to climb he will be getting another balloon done.

Angela - posted on 05/30/2009

My son Aidan has aortic stenosis, and had heart surgery when he was 3. They did what is called the ross procedure, which is when the aortic valve is replaced with the pulmonary, and pulmonary valve is replaced with a artificial (with my son, a pig) valve. He is now 6 and has been going to have it checked every 6 months. They have discovered he now has subaortic stenosis , the narrowing of the ventricle below aortic valve. It is slowly getting worse, so he will soon need surgery to fix it. He is very active and full of energy. After he had the surgery, we took pictures of him so that later on we could show him, so he could better understand what happened.

Starlae - posted on 05/29/2009

I do!! My daughter was born in 07 with HLHS with sever aortic stenosis. She has the balloon at two days old. She had her aortic valve changed at one month old. She has since had two more open hearts due to the HLHS. She is now almost two. She will be going in next year to have her mitral and pulmonary valves changed. If you have any questions or just want to talk please i am here.
STar

Aimee - posted on 04/30/2009

Hey everyone. Thanks for sharing your stories and support. It is great to meet other people going through the same or similar situations. Right now my son sees the cardiologist every 4 weeks since he is still so young, but over time the appointments should get further apart as long as nothing changes. I hope he doesn't need a procedure done again, but I know that it is highly likely. I just hope that it can wait until he is an adult, and can better understand what he has.

Joanne - posted on 04/27/2009

Hi My daughter Mia is 6 next month and she also as Aortic Stenosis, she was born with a Partial AVSD and then when she was 4 years old she had surgery to try and mend her Aortic Stenosis, they said that it was successful but can not guarantee if it will ever come back or not. She has yearly checkups and we just pray everytime that nothing has changed and she will not need anymore surgery.

Kimberly - posted on 04/26/2009

My daughter, Faith, was born with pulmonic stenosis and was cathed/valvulopasty at 3 months old. It is also dysplastic (misshapened) above and below her valve so although we are holding stable for now.....it wasn't as successful as they had hoped. She will need surgery but we are just trying to get her to an adult first if possible. She is 5yr old now and recently added to the mix of issues....they thought she was having stroke or seizures but turns out she has Tourette's, OCD, developmental delays and we are working on that. She also had atypical kawasaki's at 15months and then found her ANC (white cell) to be very low as if she had chemo setting her up for infections. Two yrs of workups later and we are finally not worrying every time she gets sick that we will be in the hospital or that something will infect her heart valve. You all are right, it never goes away but you start to enjoy and put it out of your mind for awhile. Good luck everyone with your little ones! Kim=)

Melissa - posted on 04/18/2009

I agree! It's been over two years since my son was born but I still have the need for support...especially from other moms who have been through the emotional strain. And, I've found that his condition is so rare that there aren't many of us out there.



What is TCHIN? We have a carepage for our son - ColtonJamesMahoney (carepages.com). I would love to read about your son.

Valarie - posted on 04/18/2009

My son is in Medical Journals because he survived SUBaortic Stenosis, Coartation of the aorta and kidney failure. We were told three times he would not survive his first week or two. He is now a rowdy 6 year old...you learn to live with the awareness...but he is doing great. Have you joined TCHIN? I need to update my son's page, but search "Halen Alexander" and you will find his story. I wish you all the comfort I can, and all the prayers...this is a terrifying time...it never goes away but you learn to cope. I would love to talk to you or Melissa anytime...it is insane the strength you find...and the strength and resiliency of these little guys!!!



I am so glad to find you guys, I could cry...I still need the support to...being strong all the time is hard.





But, I agree with Melissa...these little "Heart Babies," are rowdy, happy, amazing babies...and just keep stunning you with their love and tenacity...



hang in there!!

Melissa - posted on 04/14/2009

I just joined too and your post was the first I saw! I've yet to find anyone with an AS baby. My son was born with AS in Oct. 2006 and had a balloon at three days old. He developed Mitral Stenosis at three weeks and so he had to end up having surgery. But, I definitely understand how you're feeling. It never fully goes away but trust me, you'll know if there's a problem and you'll know exactly what to do. I know it sounds crazy but I actually felt more comfortable after my son went into heart failure at three weeks because I knew what symptoms to watch for with him. Hang in there - I can't say it gets any easier but you learn to adapt. There are actually days now that I don't think about his heart condition - he's just my happy, energetic son!