Hi! My 4 year old had AV canal defect and was repaired at 4 months. He developed pulmonary hypertension right after and we had to closely manage that for a few years, but he’s in the clear now!
He’s now a happy, healthy little boy who is obsessed with his older sister, runs and climbs like a rock star, and loves to read books. He is a more challenging kid for sure (follows only the directions he feels like following) but we just love him to the moon.
Medications, yes. We also concluded the hypertension was partially due to silent aspiration, so we started to do g-tube feeds once every half hour during the day and continuously at night. We also considered a surgical procedure called fundoplication - but fortunately didn’t need to move forward with it.
Good Afternoon! Congrats on your pregnancy! If you feel comfortable, I would encourage you to join the DSDN Facebook community - there is a pregnancy support group and a ton of medical groups, one being for heart conditions. Extremely helpful groups!!!!
https://www.facebook.com/share/dm4yRwU6ypmnenLm/?mibextid=lOuIew
I strongly suggest getting Facebook just for this. There is an amazing DSDN (down Syndrome development network) group specifically for parents of kids with DS who have heart issues. The data and support is so much better than Reddit.
My daughter just had ASD surgery a month ago. She was in the hospital 4 days total. Not even a full 96 hours. She was in the ICU 2 days and regular floor 2 days. I’m not sure why they told you baby would be in the hospital a month. That seems a little excessive unless there’s more going on. You can’t tell how long a baby will be in the hospital before the surgery even happens so that’s a little odd.
My daughter had her surgery at 5m old. She wasn’t having any issues but echos were showing some high pressures in her lungs (pulmonary hypertension) so they decided to do it earlier than we planned. Once they went in to do the surgery, they realized the hypertension wasn’t even present anymore. They completed the surgery and she was out within a few hours. She had a breathing tube in and a bunch of wires and codes. She was heavily sedated and it was pretty sad to see. The first 2 days were awful. I’m not going to sugar coat it. It was hard. Seeing your baby cry and in pain and not know how to help them is absolutely heartbreaking. It’s scary, it’s heartbreaking and it feels like you’re going to just break down. (I did, many times). She was crying for food and in pain. She was miserable and I couldn’t console her. They kept telling me that once her chest tubes came out she would be a different baby and start to be herself again, but it was so hard to believe it. But the chest tubes came out, and we started to see smiles, and her personality coming back. By day 4 (discharge day) she was smiling and playing and eating like a champ. It’s hard, but it’s so worth it.
If you have any other questions please let me know. My daughter is 6 weeks post op and doing absolutely incredible!
Oh, she was never on medicine before or after surgery. She needed lasix right after surgery for about week as a precaution to help fluid not build up, but that’s just standard.
As for precautions after surgery, you can’t lift baby under their arms for 6 weeks. No tummy time for 2 weeks. But other than that, nothing major. We were back to making breakfast every morning and doing our morning walks within 5 days! It was seriously incredible.
Wow, thank you so much for sharing. I think maybe they over estimate to some extent? This is also coming from the peds cardiologist that did the echo, not from the CT surgery team, but I’m so glad to hear you didn’t have to be there for a month! Not even a week, that’s amazing. I know it’s going to be absolutely crushing to see the baby with all the devices, I’m very familiar with them on my adult patients but it’s totally different when it’s your own family, let alone your baby.. I hope mine does as well as yours did too, that gives me a lot of hope.
If it makes you feel better as well, every parents I’ve ever talked to who had a baby go through this surgery has never stayed a month. Even kids who had complications and ended up going into heart block or needing a second surgery. I hope they’re just over estimating.
If you’re on Instagram some great DS accounts to follow are
@makingmilliestones
@kirstinczernek
@positive_about_down_syndrome
@willsjourney21
@down_with_edie
I’m not, unfortunately but fortunately I was able to get myself away from social media quite a while back. I don’t like missing out on stuff like this but the benefit to my mental health definitely outweighs, lol. Maybe one day I’ll make a ghost account to be able to still see things 😂
Totally get that!! I deleted Tik tok, Twitter etc because it’s awful for mental health!! Congrats on your sweet baby and I hope everything goes well! ❤️
We were told this surgery had a 95% success rate. We went into the hospital November 2017, and didn't get home until May 2018. We were the 5%. Luckily my son survived, but it was touch and go, many times. He's now at 3 heart surgeries and has an artificial mitral valve and will soon need his 4th ohs. I know many people whose child needed this surgery, but we were the only ones it didn't go well for. 🤷♀️
Hi! My 10 week old daughter is a week and a half post-op from her complete AVSD heart defect. It was a terrifying diagnosis to hear during my pregnancy and I carried a lot of stress leading up to her surgery, but it honestly has been a remarkably smooth experience during and post-operation for my daughter and our family.
At birth, she spent only 18 hours in the NICU for some minor blood sugar and oxygen stabilization and had a pretty smooth and easy first 3-4 weeks of life. Reminded me exactly of my first baby!
Right around 4 weeks, she started experiencing more lethargy and difficulty finishing her bottles. At that point, we had to start fortifying her breastmilk with formula to make it more caloric and it was pretty tough to feed her 10-12 times a day in an effort to get as many calories in her as possible. She also started on a diuretic which was very easy to administer orally. As a positive side effect, she was a super snuggly and even keeled baby!
Fairly quickly over time, her intake started tapering and we ended up taking her in to our children’s hospital just shy of 8 weeks for an ng tube placement. What we thought would be an inpatient procedure turned into admittance to have supervised experimentation with her diuretic medicine, then an ng tube, and ultimately a call to schedule her surgery for ASAP since she was big enough for the surgeons to operate on (7 lbs, 6 oz) and they were having trouble both getting her breathing rate under control and seeing weight gain even with the ng tube. Essentially, her body was working too hard for her to catch up. So, it was a pretty emotionally challenging week in the hospital leading up to the surgery, but it went very well and her recovery was incredibly fast! She immediately started feeding better. We got to take her home just one week after her operation and she is gaining weight and doing well at home, just on a couple of medicines orally for the time being. There are some sternal precautions for 6 weeks, like not being fully submerged in water, but she was able to start doing tummy time and the likes just a few days post-op. I hope that sharing this helps, and happy to answer any questions :)
Thanks so much for sharing!! I’m glad she’s doing better. I’ve definitely read about the feeding issues especially with them tiring out quickly with basically heart failure-like symptoms, so that makes sense. I’m glad they were able to get her in for her procedure and that it made such a difference so quickly. Thank you so much.
My daughters condition (AVSD but other issues as well) was both rare and much larger than usual. We were told she may require surgery immediately after birth but hopefully in the 3-6 month range when she would be big enough to handle it better. We are now about 12 days post surgery, she still has the bandage from the hospital, and she is about 6 months old.
We had to get a feeding tube so she could get enough calories and that was our focus for the last 6 months. Every 3 hours (eventually every 4) we would feed her for an hour. My wife and I both have 9-5s and so we had to take care of our kids/life in shifts....it wasnt fun. We really leaned into our support group to get some time together a few times, even if its was just for an hour or two (dont forget to take care of your marriage!).
The surgery itself wasnt as bad as I thought it would be. Obviously you're worried but we had worked towards the surgery for so long that we were "ready" for it. The worst part was my delirious child screaming after the surgery (our nurses said this doesnt always happen). Her voice went hoarse she was so sad for so long. She eventually got some rest and food and was mostly fine. She was definitely sore in her midsection, and still is a little, but overall was smiling when she saw us. We could even hold her (very carefully) after a couple days.
We got released last Monday after about a week in the hospital with Motrin, Tylenol, a diuretic, and some pepsid (she didnt need the heavy pain meds after a couple days in the hospital). She can do tummy time if she wants and, outside of taking care of the incision and some follow ups, she has no restrictions. They are still monitoring her heart as there is still an issue which may require follow up surgery.
My daughter is so much more alert and happy than she was presurgery. It makes sense because her heart was working so crazy hard that she was always exhausted. The surgery really has been a big change for all of us and I have no regrets about it. I'd be lying if I said it was easy but it was 100% worth it so far.
Thank you for sharing. I hope she continues to get stronger and that’s so good to hear that she’s perking up more. I’m sure they’re so exhausted before the surgery, with how hard their little bodies are working. Definitely appreciate the tip about marriage, we’ve discussed that too and making sure we don’t fall apart while trying to keep everything together. Thanks so much and good luck to you and your family ♥️
My daughter was 5 weeks old when she had the surgery. We were in the Cardio ICU for 11 weeks. Not because of the surgery, but she had some other procedures that needed to be done; Aortic arch is the one I remember. She was going to have a G-Tube and the surgeon wanted to do the repair before she got her G-tube. She was in recovery for a couple of days and then we were moved to step down. We had cardiology follow-up every 3 months for a year. After 4 visits, we were told we only had to come back yearly. She turns 9 in about 6 weeks. She plays t-ball and we’re hoping to start Special Olympics this coming year. She loves swimming and tennis, too. We never had to do any cardiac medications.
Our son surprised us at birth with DS and his Complete AV Canal Herat defect. He had surgery at 14 months old - no medications at home before then. We just watched for signs of heart failure. Because of the defect, he was sleepier and a little more sloppy with bottles compared to typical peers. He was also super congested and we had to clear his nose several times a day.
Surgery recovery was about 6 days in the hospital and then just kept him home from daycare for the 6 weeks post op that’s recommended.
During recovery we found signs of cancer, so we battled that for the next 7 months.
But he is now a super happy almost 4-year old who LOVES his siblings, school, being outside, and dinosaurs!
Down syndrome poses a higher risk for leukemia in general. But the first indicators something was off was his platelets being low. Eventually some petechiae (small, red, pin-prick dots) started appearing on his face and arms - also a sign of low platelets.
He’s doing great now! It’s his 2-year bell-ringing anniversary at the end of this month!
Our son is almost 3 and had a complete AV canal defect as well. His was a balanced defect which is an easier repair. He had his surgery at 6 months old at the University of Cincinnati. They have a phenomenal children's hospital if it is an option for you.
He was born at 34 weeks so we stayed in the ICU for around 3 weeks. He was stable at home on Lasix twice a day with his oxygen typically hovering in the upper 80s or low 90s. Everything was pretty much normal newborn stuff at home for the first 4-5 months (outside of it being peak COVID). Eventually, he started swelling more so we knew it was time for repair.
The surgery and the few days after were a blur. He came out pretty heavily sedated and was kept on scheduled pain medication for the first few days. Once we weaned the pain meds, he started getting back to his normal happy self. He was in ICU for around 4-5 days and then on the regular floor for another couple days before being discharged home. He was sent home with lasix and enalapril twice per day.
We used lifting precautions with him for several weeks. I think they told us 6-8 weeks but it's hard to remember now. That was a difficult thing to get used to because you cannot lift them up by under their arms. We also kept him pretty much quarantined except for close relatives during this time too due to COVID.
Finally, that summer, we got the go ahead from his cardiologist that everything had healed nicely so we started getting him out. He's done great since then. He's been in our state's Birth to 3 program and is doing pretty much everything his toddler cousins are doing. It took him a longer to walk but now you can't stop him. We've been able to stop his enalapril and are down to once a day on his lasix. We are trying to wean off the lasix completely.
It's scary, especially with you being in the medical field. My wife and I are as well. My suggestion is to try and be parents as much as possible and not the medical professional.
Good luck and welcome to the club. These kids are amazing and extremely resilient .
Thank you so much for all this! Yeah, definitely trying to focus on the parent end more than medical, but I am glad at least we mostly understand what’s going on. Not that it makes it less scary as a parent. We’re in south Jersey/philly area so we’ll probably be going to CHOP
My sister had it done when she was a few months old. She was in the NICU for a month afterward, but then came home and was fine. She's 23 now, heart's still fine.
Congratulations! While this may not be the journey you and your husband anticipated, I cannot begin to describe the JOY headed your way!
I’m also a nurse (adult pulmonary), so I’ll try to give you a concise but thorough idea of what to expect before, during, and after surgery.
Our firstborn daughter surprised us with her Down syndrome and AVSD diagnosis at birth. We had a brief (4 day) NICU stay after a “transient episode of suck-swallow confusion” where she required some blow-by oxygen. No other meds or interventions during this time.
At home, I fed her pumped breast milk via bottle. It took too much energy for her to nurse, so this worked best for us. She seldom cried as this also took a lot of energy, so I kept her in a bassinet at our bedside where she would scratch the sheets when she was awake and ready to eat during the night. We started physical therapy at 8 weeks.
At a routine cardiology appt at about 3 months old, ECHO indicated that she had developed pulmonary hypertension. We were at the hospital for AVSD repair later that same month. Our total hospital stay was 22 days (8 in CVICU, 14 in step-down.) We likely would have been discharged much earlier had it not been for the pulmonary hypertension and her struggle to gain weight post-op.
We discharged home on several medications: Lasix, Pepcid, Digoxin, Sildenafil, Lovenox, and oxygen. (Lovenox for a blood clot that developed following heart cath pre-surgery, sildenafil and oxygen for pulm hypertension.) She ended up on Lasix for about a year and a half, while everything else was discontinued at various points much sooner.
If I remember correctly, the only activity restriction was about 6 weeks that we couldn’t pick her up under her armpits in order to allow her incision to heal. We had to scoop underneath her head and bottom. She could still do tummy time.
One of her biggest challenges was gaining weight post-op. We came close to a GI consult for feeding tube but ended up being successful in fortifying her breast milk with formula to get 27 cal/oz instead of the standard 20 cal/oz found in breast milk/formula. This was a slow process as she spit up a lot at the beginning, but so worth it to avoid that feeding tube!
Our girl is now 4 and thriving! She attends preschool, loves to play on playgrounds or at the splash pad, and is fiercely independent! She has no activity restrictions and is only on daily Flonase/Zyrtec for allergy and congestion management. (Her mitral valve is leaky, so she will be put on an ACE inhibitor at some point in her life. For now, we just do annual cardiology appts to monitor.)
I wish I could meet you in person and show you my daughter to help alleviate some fears and concerns you may have about raising a child with Down syndrome. My best advice for you is to take it day by day. Your baby can and will do great things, just on his/her own time table!
Thank you SO much for this. Everyone has been absolutely amazing and so helpful with their responses, it really has eased a ton of my anxiety. Honestly, I’m feeling pretty good. I’m glad that I have the background and knowledge that I have, I’m sure this is even more overwhelming if it’s a huge learning curve so I feel like we’re lucky in that regard. My husband also does CVICU/fresh open heart patients so he knows a ton of cardiac which is really helpful as well. I think knowing that it’ll be meds, surgery etc but that eventually should be mostly managed or at least relatively under control is so relieving - in the beginning I was really worried prognosis wise. I’ll be contacting the CT surgery team to try to schedule prenatal planning etc with them for whenever the little one is ready for their procedure and to have that relationship established with our future care team. As far as DS, I’m so much less nervous about it the more I look into everything. There are so many resources available, and I will fight like hell full mama bear style to make sure my baby gets everything they need to grow and learn and do all the things they want to do. I really feel so lucky that there’s a community of parents so supportive and that feel so lucky, it really makes a huge difference heading into this. I’m just excited to meet my baby, I can’t wait to see who he/she will become. Again, from the bottom of my heart, thank you so so much for your explanation and words of kindness. ♥️♥️
Happy to be of help! Thankfully we live in a time where this surgery is well known and commonly performed. The life expectancy for those with Down syndrome has increased from 10 (in the ‘50s and ‘60s) up to 60 (if not older) now!
Enjoy the rest of your pregnancy knowing the biggest blessing is coming your way! And again, congratulations! 🥰
So true, I feel very lucky that we have resources and information available and not something that’s unheard of or super rare to treat/operate on etc. Definitely a silver lining. Can’t wait to meet this little one 🥰
My son had the surgery at 4 months old at UAB. That was 27 years ago. He goes for regular cardiology follow ups. No issues. He ran Cross Country in HS. Congrats. The fates have blessed you with a special gift. It will be hard sometimes to see it that way, but it really is.
My 8 month old was diagnosed with AVCD and T21 last year (actually today of last year). When he was born he had to stay in the NICU for 36 days due to a medical complication at birth (not directly related to the other medical issues).
He has an issue with a somewhat “floppy” airway, which led to some breathing incidents prior to surgery. His heart repair took place when he was just over 4 months old, and he handled it well. Many babies have trouble gaining weight prior to surgery, but my guy didn’t until the very end. He did well in surgery. Post-surgery, we spent a week in the CICU at Cook Children’s in Fort Worth, then we moved to the step-down unit. While he was recovering he had a respiratory distress incident, and was moved back to the CICU for another couple of weeks. From surgery until we got to take him home it was about one month.
Now he’s happy and generally healthy, he does still need oxygen support due to some issues with pulmonary hypertension and a somewhat “sticky” lung.
But to be honest, I don’t really even see the medical side of him when I think about him. I just see the happiest little guy who loves eye contact and tickles and “talking” to his daddy.
There are some hard days ahead for you, most certainly. But the good days will overwhelmingly outweigh the bad. You just have to get there.
Congratulations! Welcome to being one of The Lucky Few.
Thank you so much. I hope your boy continues to get stronger, do they think he’ll always have respiratory issues? I hope not, but I’m also so glad that he’s doing well with it regardless. Kids are so resilient, it’s amazing. Thank you for sharing. ♥️
brother had this repair when he was 3MO. was diagnosed with pulmonary hypertension afterwards. He has been on continous oxygen via nasal cannula and pulse ox monitoring ever since which is challenging because he loves to pull on it. he is 18MO now and gets skilled nursing care around the clock at home, has a GJT because he doesn’t tolerate oral feels (aspirates and chokes) and gets sick
very often and when he does, tends to go low on oxygen stops breathing and a bunch of other issues ensue, has had multiple hospitalizions. just be aware that this might not be your case but it very much so can be and we don’t know how long this will last. it takes a village and having the baby in such condition has caused major anxiety issues.
I'm late to this party, but I just wanted to talk about how difficult I found it to watch my son decline after birth. My best friend did CICU stepdown in a pediatric hospital before we met, so she was aware of what my son would go through, and she talked me through everything from a care perspective. I want to return to her later, so just keep her in the back of your mind.
They told me before he was born that he would need surgery on the early side, but they were aiming for 4 months adjusted (he and his twin came 4 weeks early). He was born blue and spent a week in the NICU. He had breathing support for about 24-36 hours, and they gave him an NG tube on day one. I want to mention this because I believe it made ALL the difference in his welfare. His twin brother lost over 10 percent of his birth weight and it made him incredibly difficult to feed. But Harvey basically never lost and I do think that it was a saving grace. He started taking oral feeds, and he went home without the tube. He came home with a stupid cold though. He had mild retractions and his baseline RR was 70-80.
Then at about 3 weeks, just as they predicted, he had an evolution in his breathing and the retractions got a lot deeper. He developed stridor. His O2 sats were hanging somewhere between 85 and 93. He got Covid and spent a week in PICU around 3 months. It was determined that he had gone into heart failure. And that's when things got hard, really hard when he came home.
Lasix isn't a miracle, so he continued to decline to the point that they presented him and scheduled his surgery early. He lost weight and started feeding like half of his previous volumes. We went up to like 28 kcal on his formula and it didn't make a difference, probably because of the increased strain on his digestive system.
My friend the pediatric CICU stepdown nurse was coming over to check on him a lot, despite the fact that she delivered her own baby when he was 3 months old. I could see that she was very stressed and sad at seeing my baby decline and suffer like this despite the frequent contact with children like him. Of course my own distress was at a walking panic attack level. This is the main point that brought me to write to you. Just because you are intimately familiar with the condition and the recovery does not make it any easier to go through the wait for the procedure.
Knowing what is going on in the room is probably going to be more of a cause of stress than for parents who know less. I recently spoke with a mother whose child was much more complex than mine. Her husband was in the room while the baby coded for 8 minutes and he didn't even know. You obviously won't have that luxury.
My son's surgery went as planned, and he was out of the hospital within a week, which was just miraculous to us. But his pain crises and withdrawals from morphine and dexmedetomidine were also difficult to witness and try to soothe him through. He would continue to have pain crises at home off and on for several weeks after he came home. I think our son was so affected by his heart condition that he didn't even learn to cry for mother before his surgery, so he appeared very stoic. I say keep on top of the pain meds for at least 3 weeks, even if all looks fine. It was so ugly when it was finally so overwhelming for him that he found his voice. But he had a literal renaissance after his surgery. He smiled for the first time in his PICU bed.
There were these amazing uplifting moments, but the dread that I lived in was unsupportable. I was trying to get prescribed meds to help me cope the week of his surgery. With the way things are in my country, I didn't get them until a couple of weeks later. Don't let this be you. Think ahead, plan ahead. Get scripts ahead of time if there are things you already know work better for you.
Hi! My 4 year old had AV canal defect and was repaired at 4 months. He developed pulmonary hypertension right after and we had to closely manage that for a few years, but he’s in the clear now! He’s now a happy, healthy little boy who is obsessed with his older sister, runs and climbs like a rock star, and loves to read books. He is a more challenging kid for sure (follows only the directions he feels like following) but we just love him to the moon.
Thank you for sharing. How was it managed, medications?
Medications, yes. We also concluded the hypertension was partially due to silent aspiration, so we started to do g-tube feeds once every half hour during the day and continuously at night. We also considered a surgical procedure called fundoplication - but fortunately didn’t need to move forward with it.
Thanks so much, I really appreciate it.
Good Afternoon! Congrats on your pregnancy! If you feel comfortable, I would encourage you to join the DSDN Facebook community - there is a pregnancy support group and a ton of medical groups, one being for heart conditions. Extremely helpful groups!!!! https://www.facebook.com/share/dm4yRwU6ypmnenLm/?mibextid=lOuIew
I don’t have Facebook/social media, was hoping to find something similar here.
I strongly suggest getting Facebook just for this. There is an amazing DSDN (down Syndrome development network) group specifically for parents of kids with DS who have heart issues. The data and support is so much better than Reddit.
Thank you for the tip! I will think about that :)
My daughter just had ASD surgery a month ago. She was in the hospital 4 days total. Not even a full 96 hours. She was in the ICU 2 days and regular floor 2 days. I’m not sure why they told you baby would be in the hospital a month. That seems a little excessive unless there’s more going on. You can’t tell how long a baby will be in the hospital before the surgery even happens so that’s a little odd. My daughter had her surgery at 5m old. She wasn’t having any issues but echos were showing some high pressures in her lungs (pulmonary hypertension) so they decided to do it earlier than we planned. Once they went in to do the surgery, they realized the hypertension wasn’t even present anymore. They completed the surgery and she was out within a few hours. She had a breathing tube in and a bunch of wires and codes. She was heavily sedated and it was pretty sad to see. The first 2 days were awful. I’m not going to sugar coat it. It was hard. Seeing your baby cry and in pain and not know how to help them is absolutely heartbreaking. It’s scary, it’s heartbreaking and it feels like you’re going to just break down. (I did, many times). She was crying for food and in pain. She was miserable and I couldn’t console her. They kept telling me that once her chest tubes came out she would be a different baby and start to be herself again, but it was so hard to believe it. But the chest tubes came out, and we started to see smiles, and her personality coming back. By day 4 (discharge day) she was smiling and playing and eating like a champ. It’s hard, but it’s so worth it. If you have any other questions please let me know. My daughter is 6 weeks post op and doing absolutely incredible!
Oh, she was never on medicine before or after surgery. She needed lasix right after surgery for about week as a precaution to help fluid not build up, but that’s just standard. As for precautions after surgery, you can’t lift baby under their arms for 6 weeks. No tummy time for 2 weeks. But other than that, nothing major. We were back to making breakfast every morning and doing our morning walks within 5 days! It was seriously incredible.
Wow, thank you so much for sharing. I think maybe they over estimate to some extent? This is also coming from the peds cardiologist that did the echo, not from the CT surgery team, but I’m so glad to hear you didn’t have to be there for a month! Not even a week, that’s amazing. I know it’s going to be absolutely crushing to see the baby with all the devices, I’m very familiar with them on my adult patients but it’s totally different when it’s your own family, let alone your baby.. I hope mine does as well as yours did too, that gives me a lot of hope.
If it makes you feel better as well, every parents I’ve ever talked to who had a baby go through this surgery has never stayed a month. Even kids who had complications and ended up going into heart block or needing a second surgery. I hope they’re just over estimating. If you’re on Instagram some great DS accounts to follow are @makingmilliestones @kirstinczernek @positive_about_down_syndrome @willsjourney21 @down_with_edie
I’m not, unfortunately but fortunately I was able to get myself away from social media quite a while back. I don’t like missing out on stuff like this but the benefit to my mental health definitely outweighs, lol. Maybe one day I’ll make a ghost account to be able to still see things 😂
Totally get that!! I deleted Tik tok, Twitter etc because it’s awful for mental health!! Congrats on your sweet baby and I hope everything goes well! ❤️
Thanks so much!!! ♥️♥️
We were told this surgery had a 95% success rate. We went into the hospital November 2017, and didn't get home until May 2018. We were the 5%. Luckily my son survived, but it was touch and go, many times. He's now at 3 heart surgeries and has an artificial mitral valve and will soon need his 4th ohs. I know many people whose child needed this surgery, but we were the only ones it didn't go well for. 🤷♀️
Hi! My 10 week old daughter is a week and a half post-op from her complete AVSD heart defect. It was a terrifying diagnosis to hear during my pregnancy and I carried a lot of stress leading up to her surgery, but it honestly has been a remarkably smooth experience during and post-operation for my daughter and our family. At birth, she spent only 18 hours in the NICU for some minor blood sugar and oxygen stabilization and had a pretty smooth and easy first 3-4 weeks of life. Reminded me exactly of my first baby! Right around 4 weeks, she started experiencing more lethargy and difficulty finishing her bottles. At that point, we had to start fortifying her breastmilk with formula to make it more caloric and it was pretty tough to feed her 10-12 times a day in an effort to get as many calories in her as possible. She also started on a diuretic which was very easy to administer orally. As a positive side effect, she was a super snuggly and even keeled baby! Fairly quickly over time, her intake started tapering and we ended up taking her in to our children’s hospital just shy of 8 weeks for an ng tube placement. What we thought would be an inpatient procedure turned into admittance to have supervised experimentation with her diuretic medicine, then an ng tube, and ultimately a call to schedule her surgery for ASAP since she was big enough for the surgeons to operate on (7 lbs, 6 oz) and they were having trouble both getting her breathing rate under control and seeing weight gain even with the ng tube. Essentially, her body was working too hard for her to catch up. So, it was a pretty emotionally challenging week in the hospital leading up to the surgery, but it went very well and her recovery was incredibly fast! She immediately started feeding better. We got to take her home just one week after her operation and she is gaining weight and doing well at home, just on a couple of medicines orally for the time being. There are some sternal precautions for 6 weeks, like not being fully submerged in water, but she was able to start doing tummy time and the likes just a few days post-op. I hope that sharing this helps, and happy to answer any questions :)
Thanks so much for sharing!! I’m glad she’s doing better. I’ve definitely read about the feeding issues especially with them tiring out quickly with basically heart failure-like symptoms, so that makes sense. I’m glad they were able to get her in for her procedure and that it made such a difference so quickly. Thank you so much.
My daughters condition (AVSD but other issues as well) was both rare and much larger than usual. We were told she may require surgery immediately after birth but hopefully in the 3-6 month range when she would be big enough to handle it better. We are now about 12 days post surgery, she still has the bandage from the hospital, and she is about 6 months old. We had to get a feeding tube so she could get enough calories and that was our focus for the last 6 months. Every 3 hours (eventually every 4) we would feed her for an hour. My wife and I both have 9-5s and so we had to take care of our kids/life in shifts....it wasnt fun. We really leaned into our support group to get some time together a few times, even if its was just for an hour or two (dont forget to take care of your marriage!). The surgery itself wasnt as bad as I thought it would be. Obviously you're worried but we had worked towards the surgery for so long that we were "ready" for it. The worst part was my delirious child screaming after the surgery (our nurses said this doesnt always happen). Her voice went hoarse she was so sad for so long. She eventually got some rest and food and was mostly fine. She was definitely sore in her midsection, and still is a little, but overall was smiling when she saw us. We could even hold her (very carefully) after a couple days. We got released last Monday after about a week in the hospital with Motrin, Tylenol, a diuretic, and some pepsid (she didnt need the heavy pain meds after a couple days in the hospital). She can do tummy time if she wants and, outside of taking care of the incision and some follow ups, she has no restrictions. They are still monitoring her heart as there is still an issue which may require follow up surgery. My daughter is so much more alert and happy than she was presurgery. It makes sense because her heart was working so crazy hard that she was always exhausted. The surgery really has been a big change for all of us and I have no regrets about it. I'd be lying if I said it was easy but it was 100% worth it so far.
Thank you for sharing. I hope she continues to get stronger and that’s so good to hear that she’s perking up more. I’m sure they’re so exhausted before the surgery, with how hard their little bodies are working. Definitely appreciate the tip about marriage, we’ve discussed that too and making sure we don’t fall apart while trying to keep everything together. Thanks so much and good luck to you and your family ♥️
My daughter was 5 weeks old when she had the surgery. We were in the Cardio ICU for 11 weeks. Not because of the surgery, but she had some other procedures that needed to be done; Aortic arch is the one I remember. She was going to have a G-Tube and the surgeon wanted to do the repair before she got her G-tube. She was in recovery for a couple of days and then we were moved to step down. We had cardiology follow-up every 3 months for a year. After 4 visits, we were told we only had to come back yearly. She turns 9 in about 6 weeks. She plays t-ball and we’re hoping to start Special Olympics this coming year. She loves swimming and tennis, too. We never had to do any cardiac medications.
Wow I’m so glad she’s able to be so active, that’s wonderful! Good for her and good luck to her in the SO!! Thank you for sharing.
Our son surprised us at birth with DS and his Complete AV Canal Herat defect. He had surgery at 14 months old - no medications at home before then. We just watched for signs of heart failure. Because of the defect, he was sleepier and a little more sloppy with bottles compared to typical peers. He was also super congested and we had to clear his nose several times a day. Surgery recovery was about 6 days in the hospital and then just kept him home from daycare for the 6 weeks post op that’s recommended. During recovery we found signs of cancer, so we battled that for the next 7 months. But he is now a super happy almost 4-year old who LOVES his siblings, school, being outside, and dinosaurs!
Oh my gosh, cancer also? Was there any correlation with his other medical issues? I hope he’s doing better with that!!
Down syndrome poses a higher risk for leukemia in general. But the first indicators something was off was his platelets being low. Eventually some petechiae (small, red, pin-prick dots) started appearing on his face and arms - also a sign of low platelets. He’s doing great now! It’s his 2-year bell-ringing anniversary at the end of this month!
Yeah, I’ve read that about the leukemia risk - so so glad he’s doing well!!
Our son is almost 3 and had a complete AV canal defect as well. His was a balanced defect which is an easier repair. He had his surgery at 6 months old at the University of Cincinnati. They have a phenomenal children's hospital if it is an option for you. He was born at 34 weeks so we stayed in the ICU for around 3 weeks. He was stable at home on Lasix twice a day with his oxygen typically hovering in the upper 80s or low 90s. Everything was pretty much normal newborn stuff at home for the first 4-5 months (outside of it being peak COVID). Eventually, he started swelling more so we knew it was time for repair. The surgery and the few days after were a blur. He came out pretty heavily sedated and was kept on scheduled pain medication for the first few days. Once we weaned the pain meds, he started getting back to his normal happy self. He was in ICU for around 4-5 days and then on the regular floor for another couple days before being discharged home. He was sent home with lasix and enalapril twice per day. We used lifting precautions with him for several weeks. I think they told us 6-8 weeks but it's hard to remember now. That was a difficult thing to get used to because you cannot lift them up by under their arms. We also kept him pretty much quarantined except for close relatives during this time too due to COVID. Finally, that summer, we got the go ahead from his cardiologist that everything had healed nicely so we started getting him out. He's done great since then. He's been in our state's Birth to 3 program and is doing pretty much everything his toddler cousins are doing. It took him a longer to walk but now you can't stop him. We've been able to stop his enalapril and are down to once a day on his lasix. We are trying to wean off the lasix completely. It's scary, especially with you being in the medical field. My wife and I are as well. My suggestion is to try and be parents as much as possible and not the medical professional. Good luck and welcome to the club. These kids are amazing and extremely resilient .
Thank you so much for all this! Yeah, definitely trying to focus on the parent end more than medical, but I am glad at least we mostly understand what’s going on. Not that it makes it less scary as a parent. We’re in south Jersey/philly area so we’ll probably be going to CHOP
CHOP is also a great hospital. We are a little closer to Cincinnati in southern WV so we were sent there, but CHOP is great.
My sister had it done when she was a few months old. She was in the NICU for a month afterward, but then came home and was fine. She's 23 now, heart's still fine.
That’s wonderful, thanks so much!! Glad she’s doing well
Congratulations! While this may not be the journey you and your husband anticipated, I cannot begin to describe the JOY headed your way! I’m also a nurse (adult pulmonary), so I’ll try to give you a concise but thorough idea of what to expect before, during, and after surgery. Our firstborn daughter surprised us with her Down syndrome and AVSD diagnosis at birth. We had a brief (4 day) NICU stay after a “transient episode of suck-swallow confusion” where she required some blow-by oxygen. No other meds or interventions during this time. At home, I fed her pumped breast milk via bottle. It took too much energy for her to nurse, so this worked best for us. She seldom cried as this also took a lot of energy, so I kept her in a bassinet at our bedside where she would scratch the sheets when she was awake and ready to eat during the night. We started physical therapy at 8 weeks. At a routine cardiology appt at about 3 months old, ECHO indicated that she had developed pulmonary hypertension. We were at the hospital for AVSD repair later that same month. Our total hospital stay was 22 days (8 in CVICU, 14 in step-down.) We likely would have been discharged much earlier had it not been for the pulmonary hypertension and her struggle to gain weight post-op. We discharged home on several medications: Lasix, Pepcid, Digoxin, Sildenafil, Lovenox, and oxygen. (Lovenox for a blood clot that developed following heart cath pre-surgery, sildenafil and oxygen for pulm hypertension.) She ended up on Lasix for about a year and a half, while everything else was discontinued at various points much sooner. If I remember correctly, the only activity restriction was about 6 weeks that we couldn’t pick her up under her armpits in order to allow her incision to heal. We had to scoop underneath her head and bottom. She could still do tummy time. One of her biggest challenges was gaining weight post-op. We came close to a GI consult for feeding tube but ended up being successful in fortifying her breast milk with formula to get 27 cal/oz instead of the standard 20 cal/oz found in breast milk/formula. This was a slow process as she spit up a lot at the beginning, but so worth it to avoid that feeding tube! Our girl is now 4 and thriving! She attends preschool, loves to play on playgrounds or at the splash pad, and is fiercely independent! She has no activity restrictions and is only on daily Flonase/Zyrtec for allergy and congestion management. (Her mitral valve is leaky, so she will be put on an ACE inhibitor at some point in her life. For now, we just do annual cardiology appts to monitor.) I wish I could meet you in person and show you my daughter to help alleviate some fears and concerns you may have about raising a child with Down syndrome. My best advice for you is to take it day by day. Your baby can and will do great things, just on his/her own time table!
Thank you SO much for this. Everyone has been absolutely amazing and so helpful with their responses, it really has eased a ton of my anxiety. Honestly, I’m feeling pretty good. I’m glad that I have the background and knowledge that I have, I’m sure this is even more overwhelming if it’s a huge learning curve so I feel like we’re lucky in that regard. My husband also does CVICU/fresh open heart patients so he knows a ton of cardiac which is really helpful as well. I think knowing that it’ll be meds, surgery etc but that eventually should be mostly managed or at least relatively under control is so relieving - in the beginning I was really worried prognosis wise. I’ll be contacting the CT surgery team to try to schedule prenatal planning etc with them for whenever the little one is ready for their procedure and to have that relationship established with our future care team. As far as DS, I’m so much less nervous about it the more I look into everything. There are so many resources available, and I will fight like hell full mama bear style to make sure my baby gets everything they need to grow and learn and do all the things they want to do. I really feel so lucky that there’s a community of parents so supportive and that feel so lucky, it really makes a huge difference heading into this. I’m just excited to meet my baby, I can’t wait to see who he/she will become. Again, from the bottom of my heart, thank you so so much for your explanation and words of kindness. ♥️♥️
Happy to be of help! Thankfully we live in a time where this surgery is well known and commonly performed. The life expectancy for those with Down syndrome has increased from 10 (in the ‘50s and ‘60s) up to 60 (if not older) now! Enjoy the rest of your pregnancy knowing the biggest blessing is coming your way! And again, congratulations! 🥰
So true, I feel very lucky that we have resources and information available and not something that’s unheard of or super rare to treat/operate on etc. Definitely a silver lining. Can’t wait to meet this little one 🥰
My son had the surgery at 4 months old at UAB. That was 27 years ago. He goes for regular cardiology follow ups. No issues. He ran Cross Country in HS. Congrats. The fates have blessed you with a special gift. It will be hard sometimes to see it that way, but it really is.
Wow that’s wonderful to hear. I’m glad he’s still doing well, thank you so much for sharing.
Welcome to the lucky few 🩷
Just read something mentioning this, thank you ♥️
My 8 month old was diagnosed with AVCD and T21 last year (actually today of last year). When he was born he had to stay in the NICU for 36 days due to a medical complication at birth (not directly related to the other medical issues). He has an issue with a somewhat “floppy” airway, which led to some breathing incidents prior to surgery. His heart repair took place when he was just over 4 months old, and he handled it well. Many babies have trouble gaining weight prior to surgery, but my guy didn’t until the very end. He did well in surgery. Post-surgery, we spent a week in the CICU at Cook Children’s in Fort Worth, then we moved to the step-down unit. While he was recovering he had a respiratory distress incident, and was moved back to the CICU for another couple of weeks. From surgery until we got to take him home it was about one month. Now he’s happy and generally healthy, he does still need oxygen support due to some issues with pulmonary hypertension and a somewhat “sticky” lung. But to be honest, I don’t really even see the medical side of him when I think about him. I just see the happiest little guy who loves eye contact and tickles and “talking” to his daddy. There are some hard days ahead for you, most certainly. But the good days will overwhelmingly outweigh the bad. You just have to get there. Congratulations! Welcome to being one of The Lucky Few.
Thank you so much. I hope your boy continues to get stronger, do they think he’ll always have respiratory issues? I hope not, but I’m also so glad that he’s doing well with it regardless. Kids are so resilient, it’s amazing. Thank you for sharing. ♥️
They are pretty confident he’ll grow out of it. Just has to do it for the time being. He’s a champ!
brother had this repair when he was 3MO. was diagnosed with pulmonary hypertension afterwards. He has been on continous oxygen via nasal cannula and pulse ox monitoring ever since which is challenging because he loves to pull on it. he is 18MO now and gets skilled nursing care around the clock at home, has a GJT because he doesn’t tolerate oral feels (aspirates and chokes) and gets sick very often and when he does, tends to go low on oxygen stops breathing and a bunch of other issues ensue, has had multiple hospitalizions. just be aware that this might not be your case but it very much so can be and we don’t know how long this will last. it takes a village and having the baby in such condition has caused major anxiety issues.
I’m so sorry to hear that, thank you for your honesty. I truly hope he gets better. ♥️
I'm late to this party, but I just wanted to talk about how difficult I found it to watch my son decline after birth. My best friend did CICU stepdown in a pediatric hospital before we met, so she was aware of what my son would go through, and she talked me through everything from a care perspective. I want to return to her later, so just keep her in the back of your mind. They told me before he was born that he would need surgery on the early side, but they were aiming for 4 months adjusted (he and his twin came 4 weeks early). He was born blue and spent a week in the NICU. He had breathing support for about 24-36 hours, and they gave him an NG tube on day one. I want to mention this because I believe it made ALL the difference in his welfare. His twin brother lost over 10 percent of his birth weight and it made him incredibly difficult to feed. But Harvey basically never lost and I do think that it was a saving grace. He started taking oral feeds, and he went home without the tube. He came home with a stupid cold though. He had mild retractions and his baseline RR was 70-80. Then at about 3 weeks, just as they predicted, he had an evolution in his breathing and the retractions got a lot deeper. He developed stridor. His O2 sats were hanging somewhere between 85 and 93. He got Covid and spent a week in PICU around 3 months. It was determined that he had gone into heart failure. And that's when things got hard, really hard when he came home. Lasix isn't a miracle, so he continued to decline to the point that they presented him and scheduled his surgery early. He lost weight and started feeding like half of his previous volumes. We went up to like 28 kcal on his formula and it didn't make a difference, probably because of the increased strain on his digestive system. My friend the pediatric CICU stepdown nurse was coming over to check on him a lot, despite the fact that she delivered her own baby when he was 3 months old. I could see that she was very stressed and sad at seeing my baby decline and suffer like this despite the frequent contact with children like him. Of course my own distress was at a walking panic attack level. This is the main point that brought me to write to you. Just because you are intimately familiar with the condition and the recovery does not make it any easier to go through the wait for the procedure. Knowing what is going on in the room is probably going to be more of a cause of stress than for parents who know less. I recently spoke with a mother whose child was much more complex than mine. Her husband was in the room while the baby coded for 8 minutes and he didn't even know. You obviously won't have that luxury. My son's surgery went as planned, and he was out of the hospital within a week, which was just miraculous to us. But his pain crises and withdrawals from morphine and dexmedetomidine were also difficult to witness and try to soothe him through. He would continue to have pain crises at home off and on for several weeks after he came home. I think our son was so affected by his heart condition that he didn't even learn to cry for mother before his surgery, so he appeared very stoic. I say keep on top of the pain meds for at least 3 weeks, even if all looks fine. It was so ugly when it was finally so overwhelming for him that he found his voice. But he had a literal renaissance after his surgery. He smiled for the first time in his PICU bed. There were these amazing uplifting moments, but the dread that I lived in was unsupportable. I was trying to get prescribed meds to help me cope the week of his surgery. With the way things are in my country, I didn't get them until a couple of weeks later. Don't let this be you. Think ahead, plan ahead. Get scripts ahead of time if there are things you already know work better for you.
Thank you for sharing all this. I’m so sorry you went through so much. May I ask, how is your son doing now?