I wanted to introduce myself. My name is Melissa and a couple weeks ago during an ultrasound due to gestational diabetes - it was discovered that our daughter has an AV Canal which also led to an amnio and a Down Syndrome diagnoses as well.

Needless to say, it was a shock. We are feeling okay about the DS, - and can't wait to meet our daughter and make her a part of our lives. The AV Canal on the other hand, is terrifying me. We met with a pediatric cardiologist and he briefly explained that she would need surgery, most likely 5 months after her birth (I am scheduled for a June 22nd c-section). I'm so afraid of this - I've read a lot and it sounds like this is a more serious defect, and I'm so scared to lose her. The cardiologist said he did not need to be present at her birth (someone would be on hand from NICU) and he would see her within 30 days of her birth. I'm trying to think positively, but it's been hard - so much unknown at this point.

That's where I am at this point - I'm hoping to gain some knowledge and maybe find some comfort too. The cardio said hers was a more severe form of it (he said something like there were 3 different severities of it?) but did say that it should be able to be repaired. But, the books on congenital heart defects seem to give such a bleak outlook when it comes to AV Canal.

Hi, and welcome

Congratulations on your soon to be born baby girl! I didn't find out about my son's DS until after he was born. But I know what you mean about the AV Canal - the DS I was OK with, the heart defect scared me senseless.

It's strange though, it's been 2 1/2 years since Matt had his heart surgery to correct it. And now, it's only the scar that reminds me that he had the defect. We were very fortunate - Matt went in for heart surgery on the Wednesday, and was out again by Sunday.

If you have ANY questions, you've certainly come to the right place. Great to have you on board

Hi Melissa and welcome to Downsyn.You've come to the right place. I will keep you and your family in my thoughts and prayers until your daughter is in your arms.
I have a son called Dominic also. I love the name you have choosen for your daughter. Does Delphine have a meaning and why did you choose that name?

Welcome Welcome and Congratulations!!!!
My Kennedy had surgery to repairan AV Canal hen she was 7 months old. The sad part is that they did not find the defect until she was nearly 6 months old. She lived that entire tme and we had no clue. Her surgery was a complete success and we were in and out of the hospital in 5 days. It was the scariest thing I have ever had to endure in my lifetime but the changes in her were amazing!!! If you have any questions at all you can PM me throught this site!
We look forward to hearing more from you! Let me know if you need anything!

Hello and Welcome. I was in your shoes just one year ago tomorrow. I learned at birth that my son had Ds as well as complete av canal. He was never in NICU..he needed a little oxygen for a few hours after birth but he stayed in my room with us until I was ready to come home (I had a c section as well).

It was far more scary to me to learn my son had a heart defect than having Ds. I know exactly how you feel...because tomorrow is my son's birthday and all those emotions are not yet gone from my memory.

To put you at a little ease....we were in and out of the hospital in 5 days. His repair was perfect and he isn't even on any medication at all. As a matter of fact, we went for a follow up with his cardiologist just yesterday and she suggested we don't come back until next year!!

I can't lie, no one want to see their baby have open heart surgery....but honestly, my imagination was far worse than what the reality was. My son was very lucky, he had no feeding issues. He was able to breastfeed and bottle feed and he got up to the desired 10 pounds and they were able to do surgery in August 05...he was only 8 weeks old. But tomorrow he will be 1 year old. He crawls everywhere, pulls up to stand, eats all table food and claps for everyone. Your little girl will do the same. Our kids do so well with surgery...it is just amazing. Honestly, my son was very weak in the days just prior to surgery. While in the NICU just hours after surgery...he sucked down a bottle in record time. It was truly amazing.

You are going to be ok....we will help you through it. PM me anytime. If you would like to see pics....just ask. Some people find it helpful..others its too much...so just ask if you feel you would like to see Daniels hospital experience.

I'll be praying you can enjoy and relax for the remainder of your pregnancy.

Hello and welcome! I'm so glad that you found us here! We'll be family before you know it! LOL

I can't help you with the heart issues, as Angela's defect was a much more minor one that resolved on it's own just before her 3rd birthday. She's had her share of "other" stuff though, so unfortunately she wasn't completely spared.

So here you are...in this club you never asked to join. It even came with a free, lifelong membership. But I'll tell you what, the benefits of this club are something no other club can offer. I know there is no way for you to see this now. But today marks the 10th year of my initiation, and I can honestly say I am NOT the same person I was before. Someday you'll be where I am, writing to another new mom. For now, you read, and you cry, and you talk, and you cry some more. We have all been there. We have all felt the same fears. There are other expecting moms on the board as well, and you'll be a great support for eachother as you start your journey.

In case you haven't seen it yet, here's the birthday post I made to my daughter today. http://downsyn.com/forum/showthread.php?threadid=15613

Happy Birth Day!!


I am new to this site and hoping to share like you all about Gabby..

Hi and welcome...my Jack is 8 weeks old tomorrow and also has a full AVSD. We learned about it when jack was 4 weeks, and we are waiting until he starts showing signs of heart failure before we do the surgery. the cardiologist thinks around 8 months. in the meantime, jack is doing sooo well. he has nursed since day 1 and he is growing like crazy. the doc says that once the defect is repaired, it will be uphill from there. i am going 1 day at a time. if i thought about my baby's iminent surgery all the time, i think i would go crazy. my dh says that i should not worry, that jack is in the best hands, but i'm a mommy...worrying is my job! right now, i am enjoying my little babe every minute. when it comes time for surgery, i know i'll be a basketcase, but i can't be a basketcase now for my kids' sake.
know that you are not alone, and i will be thinking about you and your new little one. it is scary, believe me, i'm feeling what you are right now. we'll all get through this together. pm me if you want to talk...
kristin

Hello and welcome to the family. I have seven children of which 2 have DS and both had Heart Defects. Sam is 9 yrs old and he had Tetrology of Fallot. His defect was more complicated then Katarina's who is 4 yrs old. She had Complete AV Canal Defect. Sam's surgery lasted between 7-8 hours Katarina's surgery lasted somewhere between 6-7 hours. Sam had his surgery at 5 months. Katarina was 3 1/2 months old when she had hers. Sam recovered quicker and was out of the hospital a little sooner, he also ate better. Katarina had a harder start she was smaller also born my c-section and had to be on oxygen after she was born. She was in the NICU for 12 days then we went home. She had difficulty trying to nurse but did take a bottle. About a month or more before her surgery the cardiologist put her on oxygen at home then after her surgery we were in the hospital longer as she had a harder time keeping her oxygen levels up. I think my kids just have problems with their lungs and I don't think it really has much to do with the DS. I've had problems with pnemonia and plurisy (sp) when I was younger too so I think they may have gotten that from me. I don't smoke and neither does anyone else in the house so that is good. Katarina now is my little energizer bunny and you would never have guest that she had a heart condition. She is constantly running around and does really well in preschool. I know it is scary but it does get better. My children had there surgery at Cincinnati's Childrens Hospital and their surgeon was fabulous. Sam's surgery was harder on me then Katarina's. I think that was because I had no idea of what to expect. Since Sam did so well and I knew these doctors I was very confident they would do a good job on Katarina and they did. Enjoy your pregnancy and try not to worry too much it will be ok.
Mary Beth

Melissa, welcome! Janna also had the AV Canal defect - her center heart wall was completely missing. the surgeon said the opening/hole in her heart was about the size of a 50 cent piece - about as severe a defect as you can get. she was also born via c-section and didn't need surgery right away. she came into the world eating and sucking strong and did so until her little heart wouldn't let her anymore. had the AV Canal repair at 4 mos. and made it up to 8lb.12oz. at time of surgery. it is a serious defect BUT it is the most common defect among those with Ds - therefore they have A LOT of experience with dealing with it. it's common, but it's also commonly repaired and it's common that the kids go on to thrive and live strong. they will do an echo at birth to look at the defect of her heart to determine her needs. throw the books out and check out the sites below and read and ask questions on this forum. things are going to be okay. hang in there and be strong for your little angel. can't wait to hear about her arrival. God bless you, aj

http://www.childrensheartinstitute.org/educate/heartwrk/hearthse.htm

http://www.driscollchildrens.org/DCHWEB/AboutDriscoll/content/cardio_ASD.asp

http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/cardiac/avc.html

Hello and welcome!! I too found out during a sonogram that our baby boy had AV Canal although we decided not to have the amnio. He was born at full term by c-section and weighed 8 lbs. He only spent 3 days in the hospital. The first 5 months were slow going as far as weight gain went. Dylan had his surgery at 5 months old and weighed 12 pounds, he spent 7 days in the hospital. Once he was home, I couldn't believe how much easier it was for him to drink his bottle and how quickly he gained weight. Enjoy these last couple of weeks, June 22 will be here before you know it!!

Welcome!! This is the right place to come to as many of us have been through what you are about to experience. Talitha had a very serious av canal defect repaired at 4.5 months. She is getting close to 7 months old now. Her heart had 3 holes, no working valves and all the defects were in a hard place to fix. She was fine at birth (at 36 weeks by caesar) but went into heart failure at 3 months. She went on to medication and had her surgery 6 weeks later. She spent 13 days in hospital, most in intensive care. She had most of the complications they told us about which meant she took a bit longer to recover. She now has a totally unique heartbeat but it is really strong.

Honestly now you wouldn't have a clue she was ever that sick. She is a rosy cheeked, active, smiling baby who looks incredibly healthy. She is seeing the cardiologist again in 4 months time but at her appointment after the surgery he was really happy with her.

Here is a picture of her cheeky grin:

Hello and Welcome. My name is Laura and I am mom to 3 beautiful children. Hayden is my angel and just turned 3 years old. We found out at our 20 week ultrasound that he was to be born with DS. He had an increased nuchal fold. He, fortunately, did not have any heart defects. However, because of his large nuchal fold we were told that he would probably not survive the pregnancy. The emotions you feel are powerful but remember that this is a baby first. I can tell from your post that you already adore this precious baby. Can't wait to hear more about you and your family.

Thank you everyone for you replies, they've brought me some comfort! It's so good to hear some success stories. The unknown is so scary, but I can tell that you all will be great support. Thank you so much!

Hi and welcome

Hi and welcome Melissa, you have come to the right place for hands on experiece of your concerns, its also great for lifting morale. You and your family take care

Like you, we knew about Grace's AV canal defect at 20 weeks. We suspected DS because of it. I was able to prepare for the heart completely and the DS a little. But as was said, after all the worrying, preparing and reading, I was getting a nice new little baby. Grace needed her repair at 2 1/2 months and was so much better so fast it was like a miracle. The surgeon said that while it is serious surgery, it is like bread and butter to him - simple, straightforward, done-all-the-time.

If you could just move that C-section one day later it will be on Grace's first birthday.

Welcome.. Welcome!! My youngest daughter Sadie has ds. She had a PDA and a ASD. The PDA has closed but the ASD has shrunk enough not to warrant surgery - hopefully! So, I can't not give you any advise about heart surgery- but I have one comment-

In the early intervention program we attended with Sadie, there were several kids who had heart problems and needed surgery. No matter how prepared all the parents were they were scared and often I heard, "I can deal with the ds, but it's the heart I'm having a hard time with." Anyway, although it was hard, every single parent said the surgery was the best thing for their little one. They ended up thriving and their whole personalilities bloomed!

Good luck, let us know when you have your little one

hello and welcome!
hope u find this site helpful,

Hi Melissa, welcome to the site. I don't have any information to offer as far as the AV canal, but you've definitely come to the right place.

I have a "June baby" also. My Emma was born last year on June 23.

Hello and welcome, I am still trying to upload pictures!
My Nicolas is 5 months old, he had an aortic coarctation, had heart surgery at just 7 days old and flew through the surgery like the little champ that he is! it was devastating, we did not know he had DS until he was born, then we had to deal with his heart condition...he had some pulmonary hypertension as a result of the heart condition, iis still on oxygen at nighttime mostly becuz he still has a floppy airway, which is typical of DS, his will just take a little longer to firm up, anyway, we have had so much to deal with in these five months, but let me tell you, he is a beautiful, easy child, always smiles and laughs, a true joy to have! I don't know what we would do with out him, he is doing so great, really alert and strong and very active and fits in just perfectly with his big bro and big sis! So, I know you are scared, and the future is scary and unknown, but your family and your precious baby girl will make it through with good medical care and support, which you will find on this wonderful website! you are not alone, it will be hard and scary but you will get through it and you will love that baby with all your heart and that is all that matters!
take care of yourself and good luck, and always know we are here for you..
God bless you and your family,
Mary

Hello and welcome! Alexis also was born with AV Canal Defect and had surgery at 3 1/2 mths old. I cant wait to see a pic of your angel!

Welcome, I'm glad to found this site as even though Dakota does not have any health problems ALOT of children on here do and their mums and dads are a well of information.

Hope all goes well.

Welcome to the site! You will find a wealth of information and support here. I'm only five months ahead of you on this road and Downsyn is what has gotten me through all of this. I'm no help on the surgery issue, however, but as you can see, lots of people on here have a wealth of info regarding surgery. Can't wait to see pics of your little one after she is born!

hello and welcome!! cant wait to meet your new one when she comes!! I am not experienced with surgery. we were blessed with mayson being born healthy.... hang in there, you have found a wonderufl place for support!

welcome Melissa to Downsyn

we too worried about Hannah's heart defect but generally speaking the doctors now adays seem to have so much more experience of heart operations so the outlook is alot better these days

we shall be saying prayers for you and your family and we can't wait to hear more about her when she is born

meanwhile you have come to the right place and feel free to ask any questions

you are not alone we are here to support you

Welcome! You have come to a great place for information and support. My granddaughter was born with some heart related issues, but so far has not needed surgery. I'm so sorry that you have this to worry about. There have been many children from this site that have had heart surgery and have done just wonderfully. We will be thinking of you and sending prayers your way. We will be anxious to hear all about your baby when she arrives.

Happy Birthday to your new baby!! Darah had a complete AV canal at birth and is doing so great now. Her surgery was when she was 3 months old and she was out of the hospital in 4 days. They offered to send us home on day 3, but I told them I wasn't ready. She did great, and so will your little one! It's a very serious defect, but the success rate is so high and doctors are able to fix this problem "easily." The surgery was hard, but it just seems like a bad dream now. You too will be on the other side. Good luck and I'm praying for you and your daughter and family right now!!

Hugs and prayer!!!