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Topic: AVSD

03-04-2006 03:35 PM



kfurnival
New Member

Location: Baltimore, MD
Registered: Mar 2006
Posts: 10
Last visit: 03-23-2006

I had a level II u/s at 30 weeks to check on pylectasis that had been noted in 3 previous sonograms. I am young and my quad screen was negative for all associated problems, so they said DS was not a consideration when we went in for this. I knew about all the false positives, but had never heard of a false negative! From reading some of these threads I now know that's very common as well.

They saw curved little fingers, no nasal bone, short femur and humerous, and a heart defect (which has now been diagnosed as AVSD, aka AV Canal, by ECG). For now we will assume Skyler has DS due to all of these markers, not get the amnio, and learn as much as possible before she is born.
I've gotten over the initial shock and dissapointment, but still have thousands of questions that would best be anwsered by parents! I've seen how helpful you all are, so I'd love to ask everything NOW...but I'll try to pace myself.

My biggest immediate concern is with the AVSD. Most of all I'd like to know what to expect before the surgery. Will she be sickly, tired, small, breath heavy, look blue? Are there things I need to do differently for her than a healthy baby? Do I need spesial "gear"? How long are they in the NICU right after delivery? How concerned should I be with weight gain? Any advice on helping a 2 year old understand? Can anyone tell me their experiences?

Thanks, Kristi

mother of Sophia(1/19/2004) and soon Skyler(4/25/06 DS???)

03-04-2006 04:19 PM



Hannah's mom
Senior Member

Location: Adironadack Mountains, Upstate NY
Registered: Jul 2001
Posts: 927
Last visit: 03-24-2006

Hi Kristie, Congratulations on your new little one.I love the name. Our daughter had the same defect and also a VSD and a problem with her mitro valve. She was seven weeks old when she had her surgery. her defects were pretty severe though.The doctors really wanted her to be about five months old but she couldn't wait that long.Have you had a fetal echocrdiogram yet? if not I would ask for one. I think if it were me I would want to know what the plan of action would be. They may not be able to tell much in utero though.I do know that most doctors try to wait a few months and try to get the baby to gain a little weight.As far as how long in NICU you really can't answer until she is born.Hannah was only in for six days before she came home(after her birth)after her surgery we were home in five.It depends on so many factors, if the baby is eating well and gaining weight etc.Unfortunatly most of your questions can't be answered right now, each baby is different. Hannah was very bluish and sickly looking but I didn't recognize it at the time, when I look back at pictures I really see it now, but not then.Your doctors will help you with everything and they will determine the best actions to help your little one gain weight.Hannah had to have increased calories by adding corn oil to her formula(yes corn oil!)Some babies need additional support by feeding tubes.I think the biggest thing is to take it one day at a time.It is very scary and overwhelming when you look at the big picture but if you break it down day by day you get through it.Modern medicine is really amazing and for these wonderful doctors it is very common.As far as gear you really don't need anything different yet, if you do Docs will let you know and help you with it.As far as your two year old, that is kind of hard because she is so young, you don't want to give her too much info-keep it on her level.Things like "the baby has a boo boo and the doctor is going to fix it." Maybe some others that had older sibling can help. Ask all the questions you want, that is what we are here for.We will all be looking forward to this new journey with you.Please know, it will be ok.
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Heather- Mom to Hannah(7)DS and Logan (3)
www.xanga.com/Momof2monkeys

03-04-2006 05:56 PM



kathleen
Senior Member

Location: Chico, CA
Registered: Dec 2005
Posts: 317
Last visit: 03-22-2006

Hi Kristi, Wow, I am always so impressed on the expecting mommies to find their way here. It took me forever! First off, it sounds like you are handling things well. You will have good days and bad days, that will evolve to good moments and bad moments, and finally many more good times than bad. You mentioned surgery, are the doctors saying that surgery is necessary right ASAP? Avery has an ASD and VSD. I believe it was the VSD that closed itself and the ASD has gone from mid-sized to small. The Cardiologist is going to monitor for a while, but does not foresee any interventions. I remember we were looking for sweating and fatigue during eating, blue coloring around the mouth during eating, low or no weight gain, and lag in development. I'm sure there are a ton of others and other moms and dads will help, but these were always the main questions asked. Avery was also never in NICU after birth. She stayed with us the entire time. I believe that we may be in the minority in this case though. I think the main thing that we have done differently is need helpers (PT, ST, and OT). We contacted our regional center after the Diagnosis and started one of three therapies. We have continued to add the others as time went on. Depending on the babies needs and development you can use whatever services are necessary and available. Because Avery has been so healthy, I think that we have not had to make too many adjustments. I guess our view of "play" has been converted to therapy and a necessary daily activity and we do a bit more running around for docs and therapy etc. but I think that happens with baby #2 anyway. I hope I answered your questions thus far. Keep us posted and ask away at anything!
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Kathleen - Avery's Mommy
Chico, CA

03-04-2006 06:04 PM



huskies9798
Super Member

Location: cincinnati ohio
Registered: Oct 2004
Posts: 1393
Last visit: 03-24-2006

hello welcome & congrads on upcoming skyler!!!!! The most important thing is make sure where you are going to deliver has all the staff & equip to take care of the heart problems. brooke was in nicu for 10days & only had a small heart murmur which they monitor at this time, a small hole & a valve that is closing all the way. she was on o2 for awhile so its hard to tell how long or when to expect the surgery. so ask away any question we will all be here to help you in any way we can again CONGRADS I cant wait to see skyler!!!!! love the name
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chris
mommy to brooke ds 8-30-04
my precious little angel

03-04-2006 08:21 PM



DanielsMommy
Super Member

Location: Rhode Island
Registered: Sep 2005
Posts: 1403
Last visit: 03-24-2006

Hello and Welcome. Congrats on your upcoming arrival!!

We learned at birth about my son having Ds and AVSD (Atrioventriclar Septal Defect). My son did very well, and was able to come home with us from the hospital. He did require extra calories to be added to my breastmilk. Daniel did not require any intervention at all. He did latch on to breastfeeding but wasn't strong enough to complete all his meals that way. So I pumped and bottlefed him. He at well enough up until a week prior to his surgery. He got very tired and slept alot. He never turned blue...but I suppose at some point he might have if surgery was not performed. He had his repair at 8 weeks old. We were in and out of the hospital in 5 days. I know many children require a longer stay....but fortunately Daniel recovered remarkably.

Daniel has been typically developing up until this point. He is now 9 months and into everything. He can commando crawl (not sure if that is the word...he crawls like an inchworm), roll all over the place, sit up (he still topples over...but he does sit), he babbles all the time and gives the best kisses ever.

I can imagine how anxious you must be. But, if your baby does have Ds....it is going to be ok. When I was told the news...I imagined a dreadful life.....but I was so wrong. Daniel has brought me to a new place in life...a much better place and I am forver grateful for him.

My daughter was 2 1/2 when Daniel was born. Due to his heart defect, when we brought him home...we explained that Daniel was very small and we needed to be really careful around him. For us, the transition to having a new baby came much later. Now that Daniel is a bit older, I feel this time is a bigger adjustment. All children are different....but I am sure you older one will love your new baby!!

I hope you enjoy the rest of your pregnancy..and please keep us posted!!

Oh, I am eding this post to add......you asked about if they would be small and is weight a concern. Daniel was born at 38 weeks...7 pds 6oz. Weight is definitly a concern with heart babies....his weight was checked each week and prior to surgery...he got to 10 pounds. Our doc gave us a receipe to follow to add formula to the breastmilk and as he grew...we upped the calories to keep him gaining. After surgery, Daniel continued to take meds for about a month. He is now not on any meds at all.

[Edited by DanielsMommy on 03-04-2006 at 08:27 PM]
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Lisa
Mommy to Elayna 10-1-02 and Daniel Ds 6-7-05
Always have hope....Without rain, there can be no rainbows.

03-04-2006 09:35 PM



McKenna
Senior Member

Location: San Antonio, Texas
Registered: Feb 2006
Posts: 172
Last visit: 03-24-2006

Hi Kristi and welcome!

Our stories sound so alike! We knew about Darah's heart defect during our pregnancy and had markers for DS. I will tell you though, we really believed she wasn't going to have DS and didn't take advantage of educating ourselves like we could have.

I have a 19 month old daughter who had an AVSD (it's also commonly known as AV Canal defect). Darah did great for her surgery. Prior to surgery, she was very sleepy. She would sleep 36 hours straight sometimes and wake up for 10 minutes and go back to sleep. She had her surgery at 3 months of age. We got her weight up to 12.4 lbs for surgery. Darah slept so much that getting her to eat was very difficult...so she was tube fed. Our feeding journey has been the extreme, so please don't let it scare you.

Darah's surgeon told me this, if you have 1,000 babies with AV Canals, you have 1,000 different surgeries. Darah was born at 40 weeks and was 7lbs 5oz. She stayed in the NICU for 15 days, but it was all feeding related after day 5 or 6. We had Doogie Howser for our NICU doctor and he was a lot more conservative than he should have been. They sent her home on 2 medications which are very common, Lasix (a diuretic to keep the lungs drier) and Digoxin (helps the heart pump more effectively). Other than that, she had a feeding tube that went through her nose into her tummy. I didn't like that, but felt very well trained on how to handle it.

Having said all that, Darah was discharged on Day 4 after her open heart surgery and is doing wonderful!!! They offered us a discharge on Day 3, but I declined because it just seemed too simple! Know that while the AVSD is a scary thing, most people have very good happy stories at the end of it. We call Darah's scar her zipper. It's very faint and looks like a white nail scratch! Her surgeon took great pride in her cosmetic closure.
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~McKenna~
Mom to Darah Faith (8-11-04)
Darah's Website

03-04-2006 10:28 PM



Mary Beth
Super Member

Location: Cleves, Ohio (Cincinnati)
Registered: May 2005
Posts: 2961
Last visit: 03-24-2006

Hi Kristi, Congratulations on the pending birth of your daughter. I have seven children and two of my three youngest have DS. My son Sam is 9 and had TOF. Katarina is 4 and she had Complete AV canal defect. We knew before her birth about the heart defect but she did not have any other markers for DS. She was 7 pounds 6 oz. at birth and had a hard time keeping her oxygen level up. She was in the NICU for 12 days. She had a hard time nursing. We ended up pumping and adding formula to her breast milk to add calories. Before she had surgery at 3 1/2 months Katarina was put on oxygen. Her surgery went well it was shorter then Sam's surgery. It was around 6 hours or so. She took a little longer then expected to recover as we were still having trouble with her oxygen levels for a while but she is fine now and has lots of energy. Much more then Sam. She does have to take Enalapril once a day and probably will for life but that's not too bad. She has been pretty healthy.
Mary Beth

03-04-2006 10:59 PM



kellyrimmer
Senior Member

Location: Atwood, TN
Registered: Feb 2006
Posts: 184
Last visit: 03-23-2006

Congrats!!
When I had Alexis she was 5 pounds 8ounces but she was also 3 weeks early due to my blood pressure. She had AV Canal Defect and I didnt know until she was born. She was in the hospital only a week and then sent home and had open heart surgery at almost 4mths old. She is doing great now. She had to see the Cardiologist every mth until she had her surgery and they had Alexis on Lasixs for fluid. She wasnt blue but right before they did surgery she started breathing real hard and wouldnt hardly take a bottle and was just so tired. All she wanted to do was sleep. She stayed in the hospital for 7 days after open heart surgery. Now she is a ball of fire. I have a baby now!!! She crys LOAD! She can be fussy and eats like a pig and I love it. She was behind on rolling over but It wasnt long after her surgery she started rolling over. She has really started to take off.
I hope I gave you a little idea.
Congrats again,
Kelly

03-04-2006 11:13 PM



ValerieM
Senior Member

Location: Moravia, Iowa
Registered: Aug 2005
Posts: 665
Last visit: 03-24-2006

Hi, and welcome!

My son, Nicholas had AV canal defect. But our story is a little bit different. We didn't know he had DS. Not even after he was born. No NICU for us, regular nursery or our room, then we went home! There was no turning blue, he started out eating good. But at 6 wks I called the doctor because I noticed his breathing was really rapid. Well, we had a chest x-ray, which or course showed the lungs were overinflated and heart was enlarged, so we were sent to a ped cardiologist the very next day.

That is when we found out he had AV canal defect, and also that he possibly had DS, because that defect is usually found with DS. But the DS wasn't diagnosed definitely until 3 mos when he had surgery.

I will say, from 6 wks until surgery at 3 mos, he did not eat well at all. I'm sure part of it was because of his heart, but I also think it was all the medicine he started on, too. Seemed to upset his tummy! No meds after surgery, though!
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Valerie, mom to Derek, 16, and Nicholas (DS), 2 1/2

03-05-2006 07:51 AM



Tigger
Senior Member

Location: NSW, Australia
Registered: Jan 2006
Posts: 111
Last visit: 03-24-2006

Hi. We were in your position not long ago with an ultrasound diagnosis of AVSD and possibility of DS. Talitha was born on 18th Nov 05 and we were in NICU for about 18 days because we live in a small country town and they wanted to be sure she was stable. Genetics testing confirmed the DS. She had no problems with needing oxygen and did not need any meds until last week when they put her on lasix and another med to reduce her fluid and zantac for reflux.

She has had a few 'blue' episodes mainly while she is choking and throwing up (NG tube is a nuisance) but has not needed medical assistance. Before we left NICU I was trained in all I needed to tube feed her and keep track of her heart rate and respiration in case something went wrong. They said she would go into heart failure and she did but not until last week at nearly 4 months old. Heart failure doesn't mean they suddenly have some sort of attack. It just means that things are not working as well and that surgery is becoming more urgent. Talitha is going for surgery on Thursday this week.

It sounds a lot worse than it is. Talitha has been a joy so far and we do all the normal things. She is cute and cuddly and people goo and gah over her just like any other new baby. We have been adding calories to my expressed breastmilk and she is putting on weight really well.

With you other little one it is really important that you involve them in caring for Tyler. Explain what is happening but don't expect great comprehension. Most two year olds are more concerned with their own needs. Sophia needs to know that, even if mummy needs to spend more time in hospital with Tyler, she is a very special big sister and needs a few extra cuddles too.

Talitha today

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03-05-2006 08:44 AM



rhonda
Super Member

Location: Syracuse, NY
Registered: Jan 2003
Posts: 3181
Last visit: 03-24-2006

Hello and welcome Kristi and family!! Your story sounds so much like mine, except we found out at our 20 week sonogram that we were having a boy, we also found out he had the AV Canal and a few other soft markers for Down Syndrome. I found this site shortly after and it helped me tremendously. Dylan was born at 40 weeks and weighed 8 lbs. He only spent 3 days in the nicu and was able to come home with me. I had no blue episodes, he ate fairly well (just took him a long time to finish a bottle). He had his surgery at 5 months and spent 7 days in the hospital. He is almost 3 and is my handsome blonde haired blue eyed angel who keeps me hopping!! I noticed Skyler is due on Dylan's Birthday April 25!!
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Rhonda

Taylor 13, Jordan 11, Dylan 2 1/2

03-05-2006 04:40 PM



kfurnival
New Member

Location: Baltimore, MD
Registered: Mar 2006
Posts: 10
Last visit: 03-23-2006

THANK YOU ALL SO VERY MUCH!!
I could not begin to explain how incredibly helpful it is to hear all of your experiences. This is exactly what I needed to really begin to understand, rather than all the terminology and statistics I've read and heard. It's amazing how I'm already feeling more prepared for this when nothing else I've read has even nicked the surface.

...and your children are all so beautiful. Congradulations to all of you on your wonderful children!

03-06-2006 07:53 AM



ajbest
Super Member

Location: NC
Registered: Apr 2005
Posts: 2070
Last visit: 03-24-2006

Skyler
Kristi, we had same situation � different markers and given 30-40% chance of Ds, but 100% AV Canal. We didn�t do amnio either � it wouldn�t have made any difference. Like you, we concentrated on AV Canal and didn�t even know definitely about Ds until 3 weeks after delivery. At birth, Janna stayed 5 days in NICU � was eating very well and doing wonderfully � stayed an extra day or two because of jaundice. She did have trouble eating and gaining weight starting about her 3rd month. We had to add Polycose and Canola Oil to her formula and also make it with less water to help her gain. We also started giving her rice cereal by spoon � made really thin with formula. We only had to try the feeding tube through nose once � she would NOT have it � would pull it out or cry it up. This was just before surgery � cardiologist wanted to try and help her gain some weight. She only made it to 8lb. 12oz. (was 6lb.15oz at birth) before heart surgery at 4 mos. During that month, she would tire easily while drinking, was quite pale, rarely blue, but did some fast breathing at times. Also she was on blood pressure medicine and diuretics. Will always be on b/p meds because of mitral valve leak. Janna just had mitral valve repair 2 weeks ago � not typical. Most AV canal patients out grow their mitral valve leak but hers was a bit severe. She is recovering well though. She was not extra sleepy as some are with Ds/heart defects. She�s always been quite active which made it hard for her to gain weight. She�s been in her own room from day 1 and sleeps wonderfully. By 3 months she was sleeping 12hr./night and now she sleeps 10/11. We�ve never used any special gear � just had the monitor close by and checked on her if we awoke in the night. We did have to try different nipples/bottles along the way to provide her with the best means of sucking milk when she would tire. After her surgery she ate like a champ again. Just be prepared to visit the cardiologist quite often prior to surgery and then not as often once she�s recovered from surgery. As far as your 2 year old, I wouldn�t bother with any details other than explaining in her terms that her sister is a little sick and may need to stay in the hospital, at birth, a little longer than most and that she is having her heart fixed when you get to that point. She�s going to be so good for Skyler. You can read on this site about when to tell siblings, etc. You will have to do a SEARCH to see what others suggested about this. I think most wait until they are older and can understand things better as far as telling about Ds. I will see if I can find a link to some of this info and attach it here for you. Please ask any questions you want. We will be praying for Skyler and all of you, AJ

Here are a few links about telling siblings;

http://www.downsyn.com/forum/showthread.php?threadid=8281

http://www.downsyn.com/forum/showthread.php?threadid=11616

http://www.downsyn.com/forum/showthread.php?threadid=8241

http://www.downsyn.com/forum/showthread.php?threadid=7926

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Momma to Janna (AVCanal-T21-02/02/05)
Wife to Joseph (TOF & still thriving)

"Where there is charity and wisdom, there is neither fear nor ignorance." St. Francis of Assisi

03-06-2006 08:34 AM



Ellen
Member

Location:
Registered: Aug 2005
Posts: 88
Last visit: 03-24-2006

Congratulations.

We were like you. We knew about the AV canal and prepared for Down Syndrome without knowing for sure. Grace was born a little smaller than my other kids, but still a good size. She was in the NICU for 5 days. The cardiologist told me what symptoms to be concerned about, but then monitored Grace so much that she caught the beginnings of trouble before I saw any signs. Like the other moms here, we added formula to pumped breastmilk. It was hard work for Grace to eat and when she started losing weight they did her surgery at 2 1/2 months. She was so much better so fast it was miraculous.

The funny thing about the heart defect was that it put the Down Syndrome in perspective. I just wanted my baby to better. In the ICU after the surgery I thought about the DS for a minute and was a little upset for a minute and that was it.

Knowing about Skyler's heart before delivery enables you to do some research without a sense of urgency.

I wish you the very best.
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Ellen
Mom to Tom, Kevin, Mary, Anna,
Paul, Michael, Grace (DS, 6/23/05)

03-06-2006 10:31 AM



helandy.cop
Super Member

Location: Nottingham, UK
Registered: Sep 2003
Posts: 3816
Last visit: 03-24-2006

My little boy, Matt, had the AVSD too. We didn't know about his DS until 30mins post birth.

i guess we were probably one of the lucky ones. Matt never had problems feeding drinking a bottle in 10mins. He never had any symptoms of having a bad heart - no blueness, no breathlessness, he was not a sleepy baby, or anything.

[bold]And he came home with me the day he was born[/bold] - pretty much unheard of for kids with DS and AVSD, so I'm told. He was closely monitored, but did fine. At around 3 mths he stopped putting weight on so well, so was put on higher calorie formula (though this just seemed to make him grow width-wise, without growing height-wise, so he looked pretty fat!)

Post surgery, he was no different. He still had loads of energy, ate well, etc. But we knew his heart was fixed. Matt is one of those children who didn't have the best repair, and is left with a significant leak in his valve, but is doing fine!

It's amazing how the same heart defect can affect children in so many different ways. One boy the same age as Matt with the same defect was in and out of hospital from the moment he was born til his surgery, on oxygen and all kinds of medication. Matt, on the other hand, has only ever gone to hospital for his surgery, and that's it.

With regards your 2yr old, I wouldn't tell them too much about DS yet. I also had a 2yr old when Matt was born, and she coped fine. We always told her Matt had Down's SYndrome, but it meant nothing to her. WE just wanted her to be comfortable with the words. And, as for the extra dr's visit, and therapies, she knew no different, and jsut assumed that this was normal when a baby was born. Now, she doesn't remember those days, at all, but has a better understanding of DS, even if it's just that Matt's got it, and it means he learns things a bit slower.

Matt's surgery was hard on Rachael, and her behaviour changed a lot. But with reassurance and lots of cuddles she was back to normal in no time.

Even at 2, my daughter enjoyed the book 'We'll paint the Octopus Red'. It's a great story about a little girl whose brother has DS. And although Rachael didn't understand about the DS part of it, she enjoyed the story. You can get it on Amazon.

Anyway, that's a lot of info to digest so I'll stop now! All the best.
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Helen

Mum to Rachael Kinza (25/07/01), Matthew Isaac DS (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous children!

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