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For those NOT pre-natally diagnosed

Posted by on Aug. 5, 2007 at 9:29 AM
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Hi guys,
Sorry for taking so long to get this one up and stickied. Feel free to post your stories of having your CHD baby diagnosed after he/she was born!! (Thanks Koren!)
-Nicole
Mommy to Khalil...9.12.05 TOF...2 caths, 2 open heart surgeries
by on Aug. 5, 2007 at 9:29 AM
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mamatoheartbaby
by Group Admin on Aug. 6, 2007 at 2:28 PM

On July 4, 2005 at 8:32am Addison Jacob arrived in the world; our own little firecracker. The next morning the doctor heard a slight heart murmur and sent the baby for an EKG and an x ray. Later on that day he phoned us to explain that from the results of the tests he thought Addison had a Ventricular Septal Defect (VSD). We were told that this is better known as a hole in his heart. The next day we discussed the things that we needed to watch for that could mean Addison was having complications. We let everything sink in and took our “little man” home on July 6, 2005. He was watched closely by our pediatrician for 5 days until he could be seen by a Pediatric Cardiologist (PC). On July 12, 2005 the VSD was confirmed by an echocardiogram. Addison had a moderate size hole in his heart and possible stenosis in his pulmonary valve caused by the heart working harder due to the hole. However we were told that the outlook is good; most holes close on their own over time. The PC discussed with us once again all the things to watch for, trouble eating, sudden falling asleep while eating, trouble breathing, and trouble gaining weight. We returned to the PC in August when Addison was 6 weeks old. Addison was doing great he had gained a good amount of weight and had no blue spells or trouble breathing. Our next visit wasn’t going to be until November; when Addison was 4 months old. The last 2 visits had gone so well if this visit goes the same; we wouldn’t have to go back until Addison was a year old. November 3, 2005, a day we will never forget. Going to this appointment hoping for the best turned into a new diagnosis and upcoming surgery. During the echocardiogram the PC discovered that not only was there a hole in his heart and the stenosis of the pulmonary valve. He also discovered that there was a blockage and a muscle build up from the heart working so hard. It was explained to us that these four things make up Tetralogy of Fallot. A CHD that needs to be repaired with open heart surgery. We were very lucky though because Addison was considered a “pink tet” and never had any complications before his repair. The problem we had was that with no complications, looking healthy and gaining lots of weight the concept of open heart surgery was hard to digest but….          Addison’s repair took place on January 3, 2006; everything was a great success with a great outlook for the rest of his life. A wonderful out come for our “special little man!” UPDATE March 2nd 2006 – At his follow up they found another hole in between the bottom 2 chambers of his heart. This is a hole that would have been left alone during his surgery. We are now just waiting and hoping that it closes on its own. Our next appt. is in Sept. when we will see what else Addison has in store for us! UPDATE September 28, 2006 – Addison had a sedated echo today to get some good pictures of his heart. The small hole they found at his post op appt is closed; the Dr could not find any signs of it today!!!!!! His gradient (the pressure in his pulmonary valve) is basically unchanged. 8 weeks post op it was at 18% and today he said it was about 30%. He explained to us though that on the echo the gradient is always higher and if the were to do a heart catheterization it would probably only be around 20%. There is NO leakage around his pulmonary valve, yes I said NO leakage and that is such a wonderful thing to hear!!!!! The only concern Dr. Lapuk had was that right ventricle is larger that he thought it should be. He however is going to compare this echo to older ones and see if this is just the normal for Addison. And the best news of our day!!! We do not have to go back until next September. Yes a whole year away!!!!!

Our appt is on October 1st! 
  For more info and pictures of Addison’s progress check out his care page at www.carepages.com. Care page name addisonjacob7405
ibecute72
by on Aug. 11, 2007 at 2:41 AM
Ok first let me start with I am so happy to have found this group . My son was born 2 months premature and born with a heart defect called transposition of the great vessels , with a large vsd . i didnt know he had any defects until he was a week old in the nicu . i think that was a day i will never forget . I was told of his heart defect and then had to tell his father who could barely understand me cause i was in tears on the phone trying to explain to him what was going on . he got to the hospital and talked to the doctor who then told us we had about an hour to go home pack our things and get on the road for a 3 hour trip to meet our son at Sacred Heart Hospital in Spokane Washington . I was up there for 2 months and 4 days . he had his open heart surgery on the 22 of november 2005 . i spent everyday for 2 months from 8am -8pm sitting next to my son singing,reading ,laughing ,crying etc. i could hardly ever hold him cause his sats would go down all the time so i just sat there . I was along most the time my sister would come up and spend a week or two with me then she had to get home to her family . Jeremy (jordins dad) was at home working and moving us into our new home we had just bought . I thought for the longest time that his heart defect was something i had done wrong or it was just my fault . it ate me up inside . but the doctors reassured me that is wasnt me that it just happends and sometimes god plans it out that way cause he picks special people to be parents to these special babies . So now i just think of myself as special . i have an amazing little boy who is now almost 2 years old and hes doing great . we go next month to have a heart cath due to preassures in the pulmonary valve . he now has pulmonary stenosis . but you would never be able to tell .

txlyle
by New Member on Aug. 21, 2007 at 12:34 AM
Greetings! My name is Laura, I'm 46 years old. On October 3, 2001 my son was born. I had been waiting for 6 years to conceive. My husband and I went through two miscarriages before we had our precious little gift from God.
He is not our only child. We have older children, already in the teens and adulthood.
       The morning after ,Davy, my son was born, is when we found out that he had a problem with his heart. His pediatrician heard a murmur and called for a pediatric-cardiologist. Dr. Wright ordereda EKG and a echo-cardiogram. The echo showed Davy to have bicuspid aorta with mild stenosis. His little heart, as we would soon find out, had a leak. Actually his aorta has a leak.
Since Davy was born, he has had to have 6 month check-ups with Dr. Wright. At one point he was put on Enalapril, to get his body ready for surgery #1. Davy's condition remained the same for several visits, so Dr. Wright took him off the med.
Davy will need two surgeries total by the time he is an adult. The first one will be sometime by his tenth birthday, just a temporary fix because he's still a child and growing. the second in adulthood, once he's finished growing.
 Several people told me that he would out grow his heart murmur! Can you believe that? How can people be so uneducated about heart defects?
I wish he would or could out grow it! That would be the answer to our prayers.
        I'm alittle on edge, more so now that school will be starting next week. He'll be attending public school, more kids, bigger playground, more room for accidents.
I'm just scared. He's not due to see his heart doctor until October, so I don't have the reassurance from her that I, as a mother, need to hear. We've been told that Davy will never be able to play any type of contact sport, it's too dangerous for him.
At first it broke my heart to learn that my little boy would never be able play sports. I imagined him playing football, after I learned I was having a boy. I have learned to lean alot on God. He has helped me to look at my son's life and condition in a different way.
I still worry,but that's a mothers peragative.
So, all you moms who know what I am talking about, please keep me and my son in your prayers this school year.
Wish us luck on his next echo-cardiogram visit. 
No one ever thinks, just by looking at him and watching him, that he has a heart condition. Davy is such a full throttle kid. He has so much energy! Thank God he has no limitations right now or I would be in trouble. He is always on the go. Once in awhile he does stop to read or color or build volcanoes out of clay He wants to be a Volcanologist when he grows up.
I'm so proud of my little man. He has big dreams and I know he'll see them through.
He has so much support from his whole family, friends and those who know him.
Thank you for letting me talk and vent at the same time.
Are there any more moms out there with children who have the same diagnosis? I would love to hear from you. I haven't met any, yet. I would to hear from anybody!
---Laura          
UmmKhalil
by Group Owner on Aug. 21, 2007 at 10:57 AM
Hi Laura,

Welcome to the group!

You've definitley come to the right place to find moms who know EXACTLY what you are talking about! I can remember when I found out about my son's heart (I was pregnant with him), and I told my co-workers, and atleast 3 of them said that they knew someone else with the same thing, and it 'just went away'....sorry, but TOF doesn't 'go away' (as much as I wish it did!!)

People are very uneducated about CHD's, hopefully we'll all be able to ban together and come up with good raising awareness ideas.

Your little Davy sounds like a neat little guy! I'll be thinking of him during his school year and hoping for no accidents! (I know it's tough since boys will be boys!)

Let us know how his echo goes too!!!

-Nicole,
Mommy to Khalil 9.12.05 TOF
2 caths, 2 open heart surgeries
akatetmom
by New Member on Aug. 22, 2007 at 4:38 PM
Hello, my name is Stacey mom to 3 kids, also married to the Army (which I don't mind).  DH and I have been married for 7 yrs, he is currently getting ready for a 3rd deployment to Iraq.

Our youngest son Ira, was born Nov 30th 2005 in Germany where we were stationed.  At 3 days old the Ped came in a told me she thought he had an innocent heart murmor and sent him to a ICU 15 minutes away.  When we finally arrived the next day we found he had Tetralogy of Fallot and would need an open heart surgery.  He struggled for 2 weeks, and on the 15th of December he was trasfered 1 hour away to have his BT shunt placed.  To make a long story shorter, we ended up Medevacing with the US military and eventually made it to Washingotn DC for Ira to have a full repair.  Which went great.  Now we're here in Washington state.  Ira suffered from Subglottic Stenosis Stage 3 when we first got here and had to be trasfered to Seattle to have it lasered open.  I would add a whole detailed story because there is alot more to it.  But I am sort of pressed for time, Ira has a weigh in at the Peds.  He is small for his age.  Barely hitting 0% on both height and wieght charts.  But he's mentally the age of his norm. 

Lillis_mom
by New Member on Aug. 28, 2007 at 7:02 AM

Quoting akatetmom:

Hello, my name is Stacey mom to 3 kids, also married to the Army (which I don't mind).  DH and I have been married for 7 yrs, he is currently getting ready for a 3rd deployment to Iraq.

Our youngest son Ira, was born Nov 30th 2005 in Germany where we were stationed.  At 3 days old the Ped came in a told me she thought he had an innocent heart murmor and sent him to a ICU 15 minutes away.  When we finally arrived the next day we found he had Tetralogy of Fallot and would need an open heart surgery.  He struggled for 2 weeks, and on the 15th of December he was trasfered 1 hour away to have his BT shunt placed.  To make a long story shorter, we ended up Medevacing with the US military and eventually made it to Washingotn DC for Ira to have a full repair.  Which went great.  Now we're here in Washington state.  Ira suffered from Subglottic Stenosis Stage 3 when we first got here and had to be trasfered to Seattle to have it lasered open.  I would add a whole detailed story because there is alot more to it.  But I am sort of pressed for time, Ira has a weigh in at the Peds.  He is small for his age.  Barely hitting 0% on both height and wieght charts.  But he's mentally the age of his norm. 


I just want to say that I am sorry for what you had to go through. My hubby is in the US Navy & when my lil Lilli was born they told me the same about a normal heart murmur since she was almost 4 weeks too early. They took her down for a routine check and after 4 hours of hearing nothing I wanted to know what was going on. I'm here in VA and the next day she was not even a day old yet they hellicoptered her to Pennsylvania to the #1 Childrens Hospital of Philadelphia. They did great she was there for 32 days and she has had a heart catheterization so far she may need the shunt or they are talking about connecting an artery from her brain to her heart I am very scared about that surgery. My daughter too is small for her age, my friend had a baby 3 days before I had my baby & she is huge compared to my lil lilli bug! I wish all of you the best! & I started a group for any more support that you may need being in the military & all its http://cafemom/group/militarybdbabies.com I hope to see you there & help any way possible!

God Bless,

Rachael D.              

momof3heathens
by New Member on Sep. 4, 2007 at 12:05 AM
At 35, I had already had 2 healthy pregnancies, and was on the 'borderline' for a 'geriatric pregnancy' (HATE that term! LOL!) - we decided against any additional tests, as we were growing, gaining weight and looked great on the 5 mo U/S. 

I was working still, the day I was in labor - I had false labor for the last 4 weeks - and went home, to realize at 8 pm that I was really in labor!  We made arrangement for the 2 older boys, and headed off to the hospital at midnight.  Icky back labor started not soon after!  2 hours later, time to push - but wait! The baby's umbilical cord was up over his shoulder, pressing on his neck..... so that was why his sat's kept jumping all over! (or so we tho - thought!) At birth, he was blue and non-responsive.  After the worst 60 seconds of my life - the lovely sound of baby wails filled the room, and we all heaved a sigh of relief.

After a few hours in the nursery, I was just starting to get to sleep around 5 am.... and they brought him to me, saying that they didn't know why, but that he wasn't oxygenating well - he was going to the NICU, if I wanted one little cuddle..... 

Hours later - and many tears - we were told he would need surgery - we just didn't know how soon. They intruduced us to 'Tetrollogy of Fallot' - the first I had ever heard of this CHD. I was shocked. He was around 90% O2, not bad, but not great.  They couldn't get a clear ultrasound, but expected a specialist to come in. (We had birthed at the only hospital other  than Children's with a Level 3 Trauma NICU - TG! We didn't have to go anywhere!)

After a while, I was able to go visit him in the NICU - and realized then that we would be 'OK'..... little 'bruiser boy', weighing in at 9 lb, 9oz, was going to be okay..... I just knew.... don't know how, but - I did.  Even hooked up to all those tubes and electrodes - even not being able to truly hold him..... I knew he'd be okay. 

He was born Jan 4, 2000; had repair May 8, 2000 - just a little more than 4 months - but his sats had dropped, he was tiring and getting bluer by the day: it was time.

Surgery lasted about 4 1/2 hours, and we were at the hospital for another 5 days. All I truly remember was walking into that PICU after his surgery, realizing just how pink he was!  My eyes stayed glued to his O2 sats - sticking around 98 - 99%, I was so gratetful!  We came home Mother's Day that year - probably the best Mother's Day gift I've ever been given!

Penny
AmayasMummy
by Member on Sep. 7, 2007 at 12:55 AM
Hello My name is Alanda,
 My son was born on July 1 st, 2007  18in 5 lbs 7 oz.  Right after he was born they notice he had a heart murmur and told me that it could close but they would keep a close eye on it.  He was having lots of trouble with feeding.  The next day my son was transported to Texas Childrens Hospital and so I asked for an early discharge to be with him.  Once we got there after I found out that he had Aortic Stenosis and they watched his condition for several days to find out whether they would do surgery now or could he hold off until he was older.  At 9 days old my son went to the Cat Lab so that they could attempt to open the narrowing of his aortic valve.  The surgery was supposed to be a complete success only to learn that because he was so small while they were passing the line through his heart it tore a hole in another valve and caused some severe leakage.  At 11 days old he had his 1 st open heart surgery.  I'm not sure when his next surgery will be but hopefully this can be the last for a while.  One day he will have to get the valve replaced.  Being in that hospital never knowing what to expect is the hardest thing I think we all have been through.  There's no worse feeling than the thought of loosing apart of you.  I'm so thankful I could be apart of this group because for the longest I felt like I was alone and no one could relate to what has happened to my family and I.  I looked at the pictures of your children and cried because when I look at your children I see my son and  I am just soooo amazed at how strong these little ones are.  They are truely blessings sent from above especially for us.  Although its such a hard thing to go through I don't believe God would put us or our children through anything we couldnt handle and maybe he gave us these special children because he knew we were the ones that could take very good care of them.
JNMMOM
by on Sep. 26, 2007 at 11:16 AM
Hi everyone.....

My son, Jake was born after a normal pregnancy and delivery.  We went home and everything was wonderful!  When we went for his first check up (2 weeks), his doctor discovered a heart murmur and was very disturbed.  It wasn't present in the nursery at the hospital.  He said Jake needed to be seen within a few days at Texas Children's Hospital.  The 1st appointment he could get was over 1 week later.  He wasn't happy with that, and asked if the appointment could be any sooner.  3 days later, we were at Texas Children's for a "normal" check up.  OR SO WE THOUGHT!!!!!

By the time we arrived at the hospital, Jakob was in congestive heart failure and within hours of dying.  We found out that he had Aortic Stenosis.  They did an emergency ballooning of his valve and we were told he only had a 25% survival rate.  He did great, and was home 5 days after surgery. 

Jake has had 3 Heart Caths & 2 open heart surgeries.  His last surgery was January of 2006.  He is now 9 years old, and in almost every way a normal kid.  He doesn't play outside as much, because he does get tired easily.  He is the bravest kid I know.  When he knows we're going to the hospital, he says, "Mom, am I getting an IV today?"  My husband and I have always been up front with him.  If we're not sure, we'll tell him we don't know.  If we do know, we tell him.  It makes things easier on him, that there are no surprises. 

I'm glad I joined this group and been able to read everyone else's stories. 

Heart Hugs,
Jessica
Mom of Jake, 9 ( AS & Autism), Nick, 5 (ADHD), Madison (3), Asthma
just1babyboy
by New Member on Sep. 27, 2007 at 1:18 AM
Hi there. My name is Susannah and my son Liam was born December 21, 2006 in a military hospital on Oahu. The pregnancy and delivery were normal but he was diagnosed at 18 weeks with kidney reflux (pyelectasis). We had been given all this info about his UTS and possible complications and told to keep a close eye on this condition. We moved to the D.C. area when he was 4 weeks old and obediently followed-up. All was fine. (The urologist dismissed us with "get a scan and come back in a year.") Ironically enough, in April at his 4-month WB check-up our pediatrician heard "a murmur, probably nothing" and sent us to a PC who saw us the same day and delivered the unbelievable news. My baby, who weighed 9oz.5lbs. at birth, incredibly active, alert, who tried to hold his head up immediately after he was born and stand up within his first few days, he had a medium-sized ASD and a huge VSD at the tip of his heart that was causing pulmonary hypertension (bad news for the lungs). He had never been blue, or seemed to have any issues breathing, yet he would need surgery, and soon. After further research we learned that his VSD was very unusual and in a difficult-to-reach place. A device commonly used to close ASDs and VSDs could be used on Liam only with FDA approval. Originally our PC wanted this taken care of by July 1 (in June) but we had to just sit and wait for FDA approval before the doctors could even schedule the surgery. In June we still hadn't heard anything and Liam started waking up in the morning with a lot of congestion that mostly cleared up in the day but returned at night. Labored breathing (and no small amount of mom hyprochondria) sent us to the ER on July 2nd where a doctor dropped the phrase "congestive heart failure." Not something a parent misses when her child is on the table. Liam's heart had been working incredibly hard to pump his blood but the holes were allowing oxygenated blood to return to his lungs which was causing fluid overload--in effect slowly drowning him. We got approval that week and our team of local specialists (and a PC expert of the device who flew in from Nebraska) closed Liam's holes on July 27. The surgery was one of the most challenging to date for the drs. but went well. (Our PC joked there was 1 doctor per kilogram and 1 person per pound in the OR) He was still in the PICU for a week with unexplained problems that didn't respond to meds but he came home on the 8th day. Since then all his check-ups have looked pretty good. He had some trouble breathing at one point and we had to put him on nebulizer treatments but that seems to have been the result of a cold. I think we only just stopped holding our breaths at the beginning of September. It has been a long drawn-out affair but I realize it could have been much worse. Please forgive the very long story--I haven't talked about this very much just because it seems rediculous to explain it to people who haven't been there. And I think while it was current, the last thing I wanted to discuss was the only thing I couldn't get out of my head. It is really good to find people who understand this.
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