Hellobee Boards Topic: VSD PSA

Hellobee Boards Topic: VSD PSA https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Tue, 19 May 2026 09:30:12 +0000 Adira on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806954 Thu, 01 Mar 2018 13:11:38 +0000 Adira 2806954@https://boards.hellobee.com/ This is so terrifying, especially the line where you note that if you had gone to bed that night, you would've lost your sweet baby. I can't even imagine... :crying: Thank you so much for sharing this. I truly hope all the parents-to-be on this board read this and know what to look out for. This could be life-saving information. Thank you! <3 Ajsmommy on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806946 Thu, 01 Mar 2018 12:51:49 +0000 Ajsmommy 2806946@https://boards.hellobee.com/ @Mama Bird: exactly. These "symptoms" are hard to notice and dont' seem to scream emergency, especially in newborns. But when you have more than a few of the symptoms it makes sense. I wish there was a sheet about VSD/CHD signs to look for that they gave out in your going home packet!!! Or I wish that nurse who had heard it had mentioned the signs or told me to research it or something.. @Bluemasonjar: that's an amazing story about the nurse!! Mrs. Lemon-Lime on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806941 Thu, 01 Mar 2018 12:41:40 +0000 Mrs. Lemon-Lime 2806941@https://boards.hellobee.com/ Thank goodness he’s okay! Appreciate you sharing. Bluemasonjar on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806933 Thu, 01 Mar 2018 12:22:06 +0000 Bluemasonjar 2806933@https://boards.hellobee.com/ Having gone through a somewhat similar experience I know how scary it is! Doctors and nurses are great but you know your baby best and I have learned to always advocate and push when I feel like something is not right. We had a nurse tell us last week about being at her daughter's volleyball practice and seeing the coach's infant was breathing hard. She immediately called her ER and consulted with a doctor before telling the parents they needed to take their baby in ASAP. Turns out the baby was in heart failure due to a missed CHD and that nurse saved the baby's life. Mama Bird on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806920 Thu, 01 Mar 2018 11:42:08 +0000 Mama Bird 2806920@https://boards.hellobee.com/ That is terrifying. So glad he is OK. Thank you for sharing the signs. They seem like such little things that don't scream "emergency" unless you know what to look for... T.H.O.U. on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806915 Thu, 01 Mar 2018 11:37:27 +0000 T.H.O.U. 2806915@https://boards.hellobee.com/ @Ajsmommy: Thank you for sharing. periwinklebee on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806913 Thu, 01 Mar 2018 11:33:21 +0000 periwinklebee 2806913@https://boards.hellobee.com/ I'm so sorry you had to experience this, how absolutely terrifying :heart: :heart: Thank you so much for sharing what to look for. Ajsmommy on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806895 Thu, 01 Mar 2018 10:32:04 +0000 Ajsmommy 2806895@https://boards.hellobee.com/ @agold: yes, jimmy kimmels son was born literally a few weeks after our son! He was going through basically the SAME thing. I get so choked up when he talks about it. He recently brought his son on his show and talked about it. Very moving bc it hits so close to home. His son actually had to have surgery, similar to Mrs. Smoothie's son. We are so lucky that our guy fought back and so far he's been thriving.. it still frightens me though how quickly that could change, just like before! erinbaderin on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806892 Thu, 01 Mar 2018 10:26:02 +0000 erinbaderin 2806892@https://boards.hellobee.com/ Oh my God, how incredibly terrifying to think about how close you came, and how lucky that everything turned out ok! Love to you guys! josina on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806891 Thu, 01 Mar 2018 10:25:02 +0000 josina 2806891@https://boards.hellobee.com/ So scary, reading this brought tears to my eyes. So glad that everything turned out okay. :heart: agold on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806890 Thu, 01 Mar 2018 10:24:50 +0000 agold 2806890@https://boards.hellobee.com/ @Ajsmommy: I'm so glad your baby is okay. :heart: My sister has VSD that was heavily monitored but never repaired. She's perfect. (Although always skinnier than me which I blame on her heart defect! :silly: ) Thank you for sharing your post. My OB said that heart defects are the most easily missed things on ultrasounds. (Wasn't jimmy kimmel's baby recently born with an undetected heart defect?) Us mamas need to trust our instincts and push for what we think is needed. There was just one nurse in our hospital who heard our daughter's murmur and the on-duty pediatrician said it was nothing. That was so infuriating, especially with my sister's congenital heart defect. The amazing nurse, however, pushed to have it checked with whatever test the baby cardiologist does. Thank god for amazing nurses when we are lucky enough to come across them. nana87 on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806883 Thu, 01 Mar 2018 10:11:50 +0000 nana87 2806883@https://boards.hellobee.com/ :heart: this is so terrifying. you and your dh are such amazing parents to have been so vigilant and acted so quickly :heart: Beehive on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806879 Thu, 01 Mar 2018 10:09:35 +0000 Beehive 2806879@https://boards.hellobee.com/ @Ajsmommy: Oh my gosh, I remember when this happened. So so scary. This is such an important post, thank you for sharing your experience! jhd on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806875 Thu, 01 Mar 2018 10:00:11 +0000 jhd 2806875@https://boards.hellobee.com/ @Ajsmommy: Thank you so much for sharing your experience and letting other families know what to look out for. I’m tearing up reading this. How scary. I’m so so glad you were able to get your sweet boy to the hospital in time. I know this anniversary day will bring up all kinds of memories and emotions. Big hugs to you, Mama. :heart: Ajsmommy on "VSD PSA" https://boards.hellobee.com/topic/vsd-psa#post-2806864 Thu, 01 Mar 2018 09:39:00 +0000 Ajsmommy 2806864@https://boards.hellobee.com/ We just hit the one year anniversary of a very scary night for our family. The night we took our 10 day old baby boy to the ER and he was quickly airlifted to Children's Hospital, sedated and intubated for 4 days. Yesterday marked the one year. And when I think about it it scares me to no end how close we came to losing our baby boy. I wanted to share some info here to hopefully educate and make at least one person aware of what to look for and what a VSD can mean. I wish I had known a few of the signs. I am thankful that my husband and I did put the "signs" we did notice together and took DS to the er immediately bc come to find out VSD/CHD is the #1 cause of birth defect deaths. Simply bc they can go unnoticed :shocked: Mrs. Smoothie wrote a few blogs about her experience with CHD <a href="http://www.hellobee.com/2016/02/17/when-your-instinct-tells-you-something-is-wrong-congenital-heart-defect-chd/" rel="nofollow">http://www.hellobee.com/2016/02/17/when-your-instinct-tells-you-something-is-wrong-congenital-heart-defect-chd/</a> Her's resulted in surgery to repair the hole. So far we have not had to have surgery. I'd like to share our experience and maybe give some insight for new mom's or soon to be mom's just to have. I don't in any way want to scare or freak anyone out. But I feel like knowledge is power and the more you know the better. I found out I was pregnant with DS when I was 39, I was AMA and I had gestational diabetes. I was monitored by a specialist and they never caught my sons VSD. I was induced at 38+4 and had my son at 38+5 days. He came out crying, he was so tiny, only 6 lbs 8 oz but he scored 9's on his apgar's and was ultimately deemed a healthy newborn. He latched right away and he was alert and a typical newborn. Our pedi came to the hospital as routine and checked him and he was all good to go home. There was ONE nurse that did one check of him and mentioned a slight heart murmur but our pedi said he didn't hear it...... that nurse was the ONLY ONE to catch anything and it went unexplored and we weren't given any specifics to watch for ( in the event that he did have a murmur which ultimately pretty much means he had a vsd/hole). And of course in the moment we didn't think to really push the issue bc it was taken so lightly. However, in hindsight I wish we'd been more aggressive about it. I wish we had been given specific things to look for. We took our baby home and adjusted to becoming a family of 4. DS was thriving. He was eating, pooping and sleeping just as a newborn should. He gained weight and checked out ok at his f/up apt 3-4 days later. One thing we did notice, and honestly I'm not sure we even mentioned it to our pedi but he was so noisy when eating.. He would grunt and groan, we joked that he sounded like a little rooting piggy. We would giggle and think it was cute. BUT LITTLE DID WE KNOW this is a red flag for a VSD/CHD. I **wish** someone had told us this at the hospital when they thought he might have a murmur. But we just didn't know. DS thrived for 9 days but on day 10 he was just not himself. I know that sounds odd but in 9 days you do get to know your baby. He wasn't eating, he was sleepy and he was fussy. I had a friend visit and I remember wishing she'd leave bc I kept thinking he had to eat bc it had been a while and I'd try to latch him and he'd just fuss. I tried time and time again and he just wouldn't' eat. This was our first sign that something was wrong. Alone it could just have been a tummy ache or an off day..... Later that afternoon I realized he wasn't warm enough. I know that sounds weird but when I picked him up from the rnp it wasn't nice and warm. He wasn't blue or anything and he felt warmish but just not warm enough. That's the only way I can explain it. This was sign number 2 for us. I snuggled him and was doing skin to skin until I went to put DD to bed. I gave DS to DH and off I went. While I was putting DD to bed DH changed DS's diaper and DS didn't fuss. Completely unlike him. He is a fusser, still is to this day (thank god). DH immediately realized this was way off, SIGN number 3. I immediately took him to the ER. Thinking as I went this is a waste and I probably won't get home until after midnight, ugh. After he was checked in they checked his oxygen level and it was low. They checked his temperature and he was classified as hypothermic :shocked: Que, mommy guilt and panic. While we were there he began having a hard time breathing (which would have happened at home if we hadn't taken him in when we did). He was ultimately flown to Children's Hospital and treated there. That is where we learned he had a severe VSD. And that he was very very sick. I realize now that he wasn't eating that day bc he was just fighting to stay alive. His heart was failing him slowly.... by the time we got him to Children's it was enlarged and not pumping properly and he was headed for heart failure. IF WE HAD JUST GONE TO BED THAT NIGHT WE WOULD HAVE LOST OUR BABY. He would not have survived the night. It's 100% possible that he could have died and it very well might have been classified as SIDS bc there was "nothing wrong with him" and there was no documentation of anything.. no vsd or chd... He had been a normal baby, growing and passing all dr's visits. But something was very wrong. I want to get this out there and post signs to look for. As stated above I don't want to freak anyone out or cause stress but I wish I had known a few of these things. All I can say is we are LUCKY that we put the few signs we had together. Signs of CHD/VSD in newborns--remember 1 of these symptoms alone is not need for alarm : 1. Lethargic- this is hard to determine bc most newborns sleep a lot, however if you notice a difference be conscious of it 2. Poor eating-this was one of our signs 3. failure to thrive-not an issue for us 4. fast breathing or hard to breath-not a sign for us but it did develop once we were at ER, so I suspect it would have developed at home 5. Grunting or groaning while eating-one of our signs 6. low oxygen/lips turn blue-not one of our signs but I do suspect this would have quickly come 7. low temperature-this is not listed when you search symptoms but it was one of ours I am so so thankful that we put our son's symptoms together (not eating, cold and not himself at diaper change) and took him in. The dr's actually said that unfortunately a lot of times these signs are missed or over looked which result in this being the #1 cause of birth defect deaths simply bc the babies are brought in too late. For example if we'd stayed home DS would have started struggling to breath and most likely would have been turning blue by the time we got him to ER and then he would have had to have been airlifted and there might have not been enough time to save him.... frightening. I am so thankful to have our DS and it scares me deeply to think what could have happened. ETA: some murmurs may not be heard until 6-8 weeks