Okay, I may be jumping the gun before I actually know anything but I thought I'd get some opinions from those that have been there.
Bennett is now over 10 pounds- this is great! The cardiologist told me to call him when this happened and we would go ahead and proceed with scheduling the surgery. So I spoke with the nurse coordinator at CHOP yesterday and she was a bit surprised that Bennett is not showing any signs of heart failure and is growing well. She said that sometimes in utero the baby is diagnosed with a Complete AV canal defect but then part of the VSD closes some, which they then call a Transitional AV canal defect and this would possibly postpone the surgery until Bennett is a year old. She also said it could just be that the pulmonary vascular resistance has not dropped which could explain the fact that he is not showing any signs of heart failure. I tend to believe this is the case but what do I know?
So now she would like to review this with the doctors at CHOP and most likely bring Bennett in for an echo next week in Philadelphia to see what in fact is the case and if we just need to proceed with the surgery in the next couple of weeks or hold off because he doesn't need it right now. The echo may need to be a sedated echo because a non-sedated echo would require Bennett to be still for 45 minutes and that's not going to happen unless he's asleep. We're not thrilled about him being sedated unless absolutely necessary so we need to look into this further.
Well to be honest, I was not expecting this, as our cardiologist here did not mention that this could happen and it could be that nothing has changed and it's just the PVR that has not dropped yet. I guess we will find out for sure next week what the plan will be. Either way she did say that if in fact it is still a complete AV canal defect that she did not see a problem with getting Bennett into surgery before Labor Day and with the surgeon we want. That is good news too.
So I don't know how I feel about this. Part of me just wants to get this over with because I've known about it since February that our baby would need this surgery early on and the other part of me is feeling like okay, I won't have to send my tiny infant into open heart surgery.
For those that have been in my shoes or know of others, did your babies have symptoms or no and if they didn't, did they still have the surgery early on, meaning they still had the complete AV canal defect?
Well, Benjamin had a VSD and an ASD, not an AV canal defect, but I just wanted to say that he had surgery at 5.5 months (weighing 12.5 pounds), and he never went into heart failure. Something about the pressure never dropped? LOL--I'm sure my husband could explain it, and you'd think I could after countless cardiologist appointments, but all I know is that even though around his mouth was slightly blue (more seen in pictures, months later), he never was lethargic, sweaty, or had a drop in his appetite.
ReplyDeleteGood luck! I'm sure he will do fine with the sedation. I mean, they'll have to sedate him to do his surgery...LOL
Our daughter had this very defect. She was 3mo when she went in for surgery. She didn't hit 10lbs though. She only was 8lb 9oz. Carly was not showing any signs either. However, the surgeon told us, he wished she was showing signs of distress. That would mean her heart was at the very least, trying to work. He all but shattered us by telling us that. However, we did go ahead with Carly's surgery at 3mo. Just before her surgery, we took her for profession pictures. When we got them back, several weeks later. We almost fainted. Carly did look sick. We hadn't even noticed it until she was all fixed. Needless to say, I placed those pictures in a cedar chest. They are so hard for me to look at. I almost felt like a failure, not seeing how bad she did look. Although, she didn't look too bad, according to the doctors, until she hit about 2months.
ReplyDeleteI won't try and sugar coat it for you. It's a hard tough journey. However, you will all get through it. We'll be praying for you and watching for more updates.
Lucy was born with a complete AV canal, and we were told the same as you...once she hits 10lbs we go forward with surgery. Lucy gained weight really well and, like Bennett, never showed any signs of heart failure. She was on medication but that maintained her at a good level of functioning. She hit 10lbs somewhere around 3 months, I think.
ReplyDeleteBecause she was doing so well, we decided, along with her cardiologist, to postpone surgery for a while. His words were "she'll tell us" when it's time to go.
We did EKGs every few weeks, I think the largest stretch was four weeks. And she had about four or five echos in the first six months to closely monitor her functioning. Her defect remained a complete AV canal, but she did not have any other symptoms/issues. Her doctor attributed the lack of heart failure symptoms to her body being very effective at compensating for the defect.
We finally scheduled surgery for when she was six months old (actually, just a few days before she turned 7 months old). She never really did "tell" us. The doctor wanted to schedule it because it was winter and illness would delay the surgery. He was afraid of getting into a critical situation if she did go into heart failure and then ended up getting sick. We actually did have to delay her surgery once because of an ear infection.
I, too, spent months wanting to "get it over with", but I was happy we were able to allow Lucy to grow strong and chubby and also hit some milestones. She had a little weight loss at the time of her surgery, as well as some regression in the gross motor area. (However, she sat supported for the first time the day she was discharged from the hospital!!) She bounced back so quickly, though...it was amazing to see!!
Good luck! I'd be happy to answer any other questions you might have!!
Hi Adrienne,
ReplyDeleteDylan had a complete AV canal defect as well as an additional defect (VERY rare - called an AP Window). He had his surgery at 4 months of age and never went into heart failure either. I want to say he was around 12 lbs or so at the time of surgery.
Good luck and make sure you let us know what happens! Thinking of you...
~Laurie
Our baby did have symptoms, but I realized later that the symptoms were worse than they would have been. That's because his mom is Hispanic, does not understand any English (and therefore, the cardiologists), and kept messing (excessively playing, because she didn't understand that he needed to be more calm) with him every time he had a doctor appt., making his heart work harder and causing it to appear that he was beginning heart failure.
ReplyDeleteI do know that the nurses commented (after surgery) that it was nice he could have the surgery so young (3 months) because he could still rest without knowing what he was missing. i.e. playing, crawling, etc. For the most part, he laid in his hospital crib for a week without issues. So, I'm glad he wasn't a toddler before having surgery, although I am sure that your doctor knows what he is doing and will make the best decision or help you to make the best decision for Bennett.
That's great he is doing so well! Our friends have a 33-year-old daughter who had a heart issue that healed on its own back when she was a baby, and she ended up not needing surgery at all.
Wow! Our son had complete AV Canal Defect. He was barely able to to make it the three months before he had the surgery. We had it scheduled and showed up and the surgeon wanted to put it off another 3 weeks. He thought I was being melodramatic when I told him Christopher would be dead in 3 weeks. He believed me after surgery.
ReplyDeleteI really don't know what advice to give you other than to go with your gut. You know your baby the best. I think on one hand it would be great to have the surgery while he is doing well to make recovery easier, but then you don't know how long it could have been put off until he DID get sick. Sorry, I'm not helping.
I hope that the ECHO and dr appt will help it easier to make this decision.
Steph
Reid's main symptoms were that he had been hospitalized twice for respiratory issues...they felt that because his heart was compromised he was having a hard time fighting these infections so we proceeded with his 1st surgery at 7 1/2 months. He was also having a hard time gaining weight. He was only 10 pounds at 7 1/2 months. He thrived afterwards. Originally our cardiologist wanted us to wait until he was about 1 year so the heart had some time to grow, but his illnesses pushed it up sooner. I am interested to see what they say to you after their meeting. I think it was wise that the nurse at least felt this needed to be discussed or put on the table to see what the Dr. says. If Bennett is doing well with no signs, no struggling to breathe (chest really becoming concave as he breathes in), no blue around the mouth, and he is gaining weight...it might be a possibility to just let him grow a bit more.
ReplyDeleteBTW...Bennett is just so cute and rolly polly!
Lindsey had 2 ASDs and still has a VSD but it doesn't look like she will require any surgery at this point. When they first told me they were doing an ECHO in the NICU because she probably did have a heart defect that would require surgery I couldn't believe it. I just remember thinking I would still be on maternity leave when my baby will have open heart surgery. I can see how you would want to get it over with. Do they always sedate for the ECHO or is this because of the possibility of surgery? Lindsey has had 4 ECHOs and there has never been mention of sedation.
ReplyDeleteSo glad to hear Bennett is growing well. He is such a cutie! Good luck with the appointment.
Our Rylee had a complete AV Canal, and had surgery when she was almost 3 months old. She was, however, showing signs of heart failure, so it was easy for us to see she needed the surgery. (I mean, we KNEW she needed it, but when you actually see the physical signs, it helps you to understand...) Anyway, I agree with others in reminding you to go with your gut! It is incredibly difficult to hand your baby over to the anesthesiologists... I'm not gonna lie. However, Rylee has had other (much more simple) surgeries in the last few years, and all I say to myself is, "I am SO glad she had heart surgery when she was so young..." She didn't know what was going on at the time, and she definitely doesn't remember anything. Our kiddos are tough little cookies... Bennett is going to fight hard just like Rylee did! I wish you the best in making these medical decisions, because I KNOW they aren't easy! Just know that whatever you decide is what will be the best!! Hugs to you!
ReplyDeleteI haven't been in your shoes, but wanted to let you know that you are in my thoughts & prayers.
ReplyDeleteWow! Something new..I have no advice, but am anxious to hear the outcome. I plan to ask Parker's Dr about this wed! I did ask last visit if it could correct itself and she said the holes can close, but since Parker has one valve instead of two, he will have to have the valves separated. Can't wait for the update! Love the blog construction!
ReplyDeleteSiena was not showing signs of heart failure. I was told the sleeping through the night part at such an early age was because of her heart. Se wasn't gaining great but enough that the doctors were happy with her progress. Siena's VSD almost closed completely on it's own. That's why her surgery was postponed. If that is the case, that is great news! The cardiologists at CHOP didn't want Siena to go past 15-18 mths old w/o the surgery due to risk of pulmonary hypertension (?)....hardening of the arteries in the lungs. That's irreversible, supposedly. So Siena was about 13- 14 lbs when she had her surgery shortly after her first birthday. I will say that I, like you, didn't like the idea of a sedated echo. We agreed to it because it is the best way to keep them still and see clearly. I know it's true because Siena had a normal echo with Hansrote a couple weeks prior to having a sedated echo at CHOP. She was moving around with Dr. Hansrote and he could get a good idea of what was going on with her heart. BUT....the sedated echo caught the closing of the VSD...which the normal echo did not catch. So, I know it makes you guys worry....it did the same to us. But Siena did well with the sedated echo. They took great care of her at CHOP.
ReplyDeleteI know it's hard dealing with all of this. Once it's behind you, you can breath a big sigh of relief. He will never remember what happens to him during/after the surgery. You and the doctors just need to make sure it's the right time. Everything will work out. :) Thinking of you guys!!!!
Morgan was having signs of heart failure with her AV canal. She was 7 lbs. 10 oz. at birth and gained a lb. her first month and then it was downhill from there. She kept losing weight, was breathing so fast that she didn't have time to swallow between breaths while nursing and kept choking and vomiting with feeds. Her heart was working so hard that her pediatrician finally decided I had to stop breastfeeding her. She was burning more calories trying to eat than she was taking in. She wouldn't take a bottle so we had to do ng tube feeds for 3 months. The original plan was to have the surgery when she was 6 months old but she couldn't wait that long. We finally got her to 10 lbs. with tube feeding and adding extra calories to the breast milk she was receiving when she was 4 1/2 months old and that was when she had the surgery. So to answer your question...she started showing signs of heart failure after about a month of birth. Makes me sad just to think about it now. It is such a relief to get the heart issues and surgery behind you. It's nice to only have to think about the Down syndrome. I didn't even have time to worry about that until after the surgery.
ReplyDelete