Did Someone Just Punch Me In My Gut

On this day I was getting a sonogram. I have to say that the best baby doctor visits are when you get to see your baby! As the sonographer rolled the mouse like contraption on my stomach, my husband and I looked at our baby girl with such a delight. She was the cutest little bug we had ever seen! She pointed out her little fingers and toes and told us her measurements and her predicted weight. As she was moving the contraption my husband and I were just chatting amongst ourselves when we noticed that all of a sudden she stopped and began to focus on a certain part of the screen. It became so quiet and we could tell that she was in deep thought. We asked her if everything was okay and she smiled and said that she needed to get the doctor. That was the moment that our life would change forever and I’d ask my ‘Did Someone Just Punch Me in My  Gut?’.

Learning Your Baby Has a CHDThe doctor came in, immediately looked at the monitor, spoke quietly to the sonographer, nodded her head in agreeance and then looked at us and said, ‘It looks like your daughter’s heart is not forming correctly.’ She then proceeded to tell us that we would need to be seen by a heart specialist as soon as possible. Did someone just punch me in my gut? We had so many questions, so much confusion and so many scary thoughts. Our doctor explained to us what she saw but wanted us to wait until a specialist could sit down with us after observing the baby. Thankfully our doctor was able to get us seen the next day.

 After our appointment with the heart specialist we were sent for more tests, one being an amniocentesis. This was the more emotional and difficult tests that I have ever taken in my life. You might think it was difficult because of the process of the procedure but it wasn’t. It was difficult because as the test was being given, there was a big screen in front of me and when the needle entered my stomach you could actually see the baby kicking at the needle. I felt like she knew something was right and was not happy with that huge needle being stuck inside of her current home.
When you are pregnant and your baby is diagnosed with a heart defect you are told that there might be additional birth defects, so after the amniocentesis I laid in bed and just waited. I didn’t care about the beautiful downfall of snow or that the kids were having an amazing time playing outside. The only thing I could think about were the results of the tests.  A few days after the test, my doctor called me with the test results; an immediate weight was lifted off of my shoulders. Her words were beautiful, ‘The tests did not show any other signs of birth defects’.
 
Finding out that your child, has a congenital heart defect sends you through an emotional roller coaster. You have so many questions and so many big words are used and then you search Google and in turn that sends you through a spiral of nightmares and even more questions. During each visit to the heart specialist as your child is being evaluated you always have that fear that something else will be wrong. It’s hard, but for your child, you have to be strong.
As a mom of a child that was born with a congenital heart defect, I am here to tell you that you don’t have to be alone. My advice to you is to join ‘heart’ groups. Often times the hospital that your child goes to will have a list of groups that you can join or / and there are many Facebook groups.
What’s your story? Have you had an experience like this? What are your tips for moms and dads handling the news of a sick child?
 

Comments

  1. Jessica beeler says:

    I am a heart mom I am 6 months pregnant and my baby has HLHS. Here is my story! ……… My husband and I had a baby boy oct 10 th 2014 healthy, loving, and he brought so much joy to our lives. I wasn’t planning on getting pregnant any time soon with breastfeeding and getting to know my new baby. But the when I was suppose to go get my iud I found out I was pregnant again! Yay well my thought apparently God had other plans for my life. Having my first son was wonderful and easy and I figure well hey why not have another sweet baby! At 10 weeks they done my harmony test for the sex. The test comes back another boy! Well my son my husband and I go on vacation no worries, Excited about the great news. We come home tell everyone about our new baby boy have a appointment at 16 weeks for a ultrasound everything looks great accepted the ultra sound lady gets quiet and gets the doctor to tell us we need a second doctor to take a look at the babies heart. We wait what seems to be the longest week to see a high risk OB. She tells us our baby has half a heart and at this point most couples would choose to have a abortion! oh my. My heart seemed to have stopped I cried so much. Abortion is something I would never consider! So we left, I called my OB told him my experience with the high risk OB. He then sent me to a cardiologist. She was very nice and told us there was reconstruction surgeries we can have done. Not to fix the problem but give him a chance to survive. So now we have found a hospital that can perform these surgeries and they are watching him closely and taking good care of us through this devastation! This is the worse feeling finding out your baby has chd and there is a possibility that he won’t survive

    • aimeefauci@gmail.com says:

      I am so sorry you are having to experience this. It is a roller coaster and you will go through a lot of emotions! Always bring someone with you to important doctor visits, take notes, ask questions, have the dr write down what he is saying, and try and stay strong. It is hard. I’d also start a journal to document your experiences. Journaling really helps.

      I also encourage you to find CHD support groups via FB or and or from the hospital.

  2. My daughter as well as a heart defect, a rare one at that! Right ventricle diverticulum our story is similar, went in for a extra ultrasound to make sure her growth was not off the charts since i measure beyond the charts. We had a wonderful time recieved a 3d view of her beautiful face was estatic over just how lucky we were to be having a baby girl! Then the doctor came in and told us the news that completely crushed my entire world. In a white out blizzard we rushed to the main campus to see a fetal cardiologist and spent 4 hours there in silence. I watched that screen like a hawk and then proceeded to be tols that shes high risk. It was the 2nd crushing news that day and my delivery could go 2 ways! Even more worse news! That following day i probably cried more than i did my entire life sitting at my desk at work. That weekend was my shower, how could anyone celebrate anything after those previous doctors appointment, but i sucked it up and carried on. I did my visit of the hospital and was shown the 2 places she would reside after birth the nicu followed by the horrible picu. When my scheduled induction came i didnt know how i felt the entire time. I had then felt so much pain after my water broke and kept saying shes safer in me and became selfish; i didnt want her out! But after my epidural didnt work what so ever and finding out i also couldnt give natural birth ever! The typical dream birth plan i wanted went down the drain. I was prepped for csection and then that medication didn’t work either! I was alone in the OR and beyond scared out of my mind! Im being put to sleep and will miss everything! I kept thinking what if she doesnt make it? ill never hold her while she took her last breath. But to turn the horror story around she was born completely healthy and stable! 12 hours later i held my precious miracle for the first time and do every day at 16 months now! We our on a monitoring watching i have not a clue what her future holds or how things will be if something does take the wrong turn! Her murmur went away along with her extra holes but her right ventricle will always be very thin and have her extra pouch for each time it pumps. She is a walking miracle considering my last ob appointment i was spoken to about counseling support after a possible death of a infant. Sometimes god makes scary magic and does it so mysteriously! Xoxoxos to your little one from my miracle to yours!!!

    • aimeefauci@gmail.com says:

      Welcome to the heart club. Thank you so much for sharing your story. The feeling of being so alone when you find out your unborn child will be born with complications is so unexplainable.

  3. I can only imagine how hard it can be. I had to return to the hospital when my son had jaundice and that was SO hard. I don’t know if I could handle something else.

  4. That is so scary. I can’t imagine finding out my child had something like this.

  5. I am just glad all is okay – though I am sure it must have been so painful and scary..

  6. That must have been so scary for you and your family. I’m so glad she is ok. Hugs to you girlie.

  7. Chrissy Mazzocchi says:

    Awww sweetie I couldn’t imagine what you were going through at that time. I’m so glad that there are no other defects. She will be a beautuful and happy child <3

  8. Wow, this story stopped me in my tracks. I can’t even imagine. Thank you for sharing this.

  9. I have never had this experience, but I applaud you for sharing your experience. God bless!

  10. How scary! You really take things like that for granted until something like that happens.

  11. I am so glad that everything is okay! What a scary moment as a parent! Thank you for sharing your story!

  12. my husbands cousin had a baby that had the same thing although they didn’t find out until they had put him in the carseat to go home from the hospital. the chlid went into cardiac arrest and they rushed him back in side. By the grace of god they managed to get in surgery fix the problem and the boy is now 24 yrs old today, the godfather to our son and he’s a great kid.

    sending prayers to you and blessing that you too and your little one maybe blessed with the grace of god. and HOPE for a brighter out come

  13. Debbie Denny says:

    So scary to have happen. Very happy your little one is doing ok.

  14. Jess Weaver says:

    I am so glad your baby is ok. CHD is scary business! I had an infant brother pass from a serious heart defect. 🙁

  15. One of my nephews needed heart surgery shortly after he was born. I’m glad there are support groups out there for families going through this!

  16. It is so wonderful that you were able to find out ahead of time – I know when I was pregnant so enjoyed every moment and was blessed that my son came out perfect –
    My husband was born with a whole in his heart – so the first 12 years of his life he couldn’t play outdoors or rough house – but at 13 he got his first surfboard and made up for it – Blessings and hugs 🙂

    • aimeefauci@gmail.com says:

      Oh wow, I bet that was so hard for your husband! We try to watch our daughter’s activities even though the doctor says it’s okay.

  17. I am so sorry. I could not imagine what you are going through. Sounds very scary, with medical technology I pray they can help in leaps in bounds!

  18. One of my good friends and his wife had a baby last year (their 2nd) and she has CHD. She’s had a couple of surgeries and more wait for her as she gets older. She’s on a breathing tube now and steroids have her all chunkie and cute. Poor baby. I can only imagine what it must be like for any mother to have to hear the news and live through that.

  19. I imagine that was very scary. My sonogram for my daughter had a white spot on it. They said it was going to be Downs, Cytomegalovirus, or nothing but perhaps a calcium deposit. I was scared to do the amnio because they said there was small risk (silly, I know). But I did have those sonograms once a week until she was born, so I know that fear of worrying about your baby that you can’t see.

  20. That must have been such a horrible feeling, on the plus side there are no defects and I’m sure your child is going to be just fine!

  21. I am so thankful to hear that there were no other birth abnormalities. Being a mother, it can be quite scary when your child’s health becomes compromised.

  22. I cannot even fathom what you must have felt like & gone through! Thankfully no other birth defects!

  23. I am so sorry you had to go throught this. I have always been afraid to have an ultrasound. My first ever ultrasound showed that I had a miscarriage. It’s an awful feeling when the tech stops talking.

  24. I can’t even begin to imagine how I would feel in this situation. I’m there for all mamas in this situation.

  25. That must have been so terrifying. I am so happy for you that it wasn’t much worse. It must have been very emotional for you to write about this. Is everything okay with your daughter now?

  26. I count all my blessings with such easy and normal pregnancies. i can’t begin to imagine what you went through.

  27. I can’t even imagine the worry that caused. Both of my kids were healthy but I worried about them like crazy and still do.

  28. I couldn’t imagine. When my son was still in my belly we learned he had kidney issues and I thought that was the absolutely worst.. I’m so glad everything turned out omay,what a blessing!

  29. I can’t imagine what your mind must have gone through with the news. I don’t think I could have handled the news well

  30. This must have been a very emotional post for you to write. I cannot even begin to imagine how I would have felt hearing that about my baby. I see this is an old post, so I am hoping that everything is alright with your daughter now?

    • aimeefauci@gmail.com says:

      She is almost 10 years old and knock on wood… she is skinny as a rail but doing awesome! Thanks for asking.

  31. Oh my goodness, I’m so glad that everything worked out okay! It makes you really appreciate things like good health.

  32. Searching terms your doctor gave you is the worst. Most of the time you can’t adequately decipher what you read leaving you with even more anxiety. Blessings to you and your family.

  33. That had to have been an incredibly scary and stressful time. Thankfully there were no other defects but I imagine that took a toll on you and your husband for some time. It sounds like you had great medical care which is such a plus in a situation like this.

  34. Getting an ultrasound is always scary for me since I had a miscarriage once. It’s a good thing that they exist though, because they do make it easier to tell if something isn’t right.

  35. Catherine S says:

    That had to be so scary and I am happy that everything turned out okay. It is great that they have a support groups for parents.

  36. I am sorry you went through this. My son was diagnosed with strabismus at an early age. Waiting for tests, results was a nightmare

  37. That had to be terrifying! I can’t imagine finding something like that out during a routine appointment. My daughter has several genetic disorders, but they weren’t caught until after birth. It’s always difficult raising a sick child…

  38. I can only imagine how terrifying that moment must have been, not to mention the time after. It’s good that the doctor caught the signs early so you could have an idea of what was ahead.

  39. Rocio Chavez (@yoursassyself) says:

    As a child born with a CHD and being here to live to tell the story, all I can say is that after reading your story I’m grateful I was born at a time when such testing was not the norm. So happy my mother didn’t have to grapple with it all before I was even born because ultimately it all turned out ok and i think I’m a stronger person for it. 😀 Cheers to continued good health to your family.

  40. Oh my, I had no idea! I’m glad everything is working out now! Praise the lord for healthy babies.

  41. Definitely a shock to the system! The daughter of a friend of mine was born with heart issues and actually had to have a transplant a few years ago! She is doing wonderfully and its such an amazing thing to watch her be a “normal” kid after all she’s gone through! Prayers for your daughters continued health!

  42. Thank you for sharing your experience in honest words. I can understand the ‘feeling punched in the gut’ part. After my second daughter was born and told she was healthy, that afternoon the dr. came back in my hospital room and told us the nurse had detected a heart rhythm. The next day we found out she had two holes in her heart. I remember thinking, am I gonna lose my daughter? But God is good, and by the time she turned 1 year old, her heart had completely healed.

  43. My first daughter was born with a very rare birth defect- I too had that sonogram experience and the terrible amnio. My story is different because my beautiful baby girl passed away shortly after I gave birth. No matter, it is hard for every parent to know their child is sick inutero. My advice is too stay as strong as possible, always lean on others for support, ask for help and a lot of it, and always ask a lot of questions when it comes to the doctors and nurses who are helping you.

  44. That must have been the scariest thing in the entire world. I am so glad that your daughter is ok! Sharing this, will give so many others courage.

  45. I can’t imagine how devastating that must have been and am so glad your daughter is okay. Your story will help so many parents.

  46. It must be so hard finding out such news, but knowing you are not alone must also really help.

  47. I can’t imagine the feeling, but I’m so glad that your baby girl is doing well. I’m glad you shared your story because there is someone out there that really needs to hear it. Prayers for your daughter!

  48. So glad that everything turned out ok Aimee! I’ve had a couple of scary moments with my youngest daughter having seizures when she was a baby which led her being in the hospital. I was so scared out of my mind!

  49. Wow. When you are pregnant your body goes through so many changes,physically and emotional. I pray your child’s continued health and growth.

  50. Thanks so much for your transparency with sharing such a touchy matter with us. I could only imagine the waves of emotions while doing your ultrasound. I am grateful that you are able to speak out and help empower those who may be facing the same challenge.

  51. I can imagine, vividly, how this must feel…but still probably have no idea. Prayers for you and your child.

  52. I can’t imagine the shock during that sonogram. I had to have an amniocentesis with my youngest child to make sure her lungs were properly developed so that she could be born early due to some complications that I was going through. It was not a pleasant experience at all. Prayers for your beautiful child!

  53. When I was pregnant with my middle child I was told during the 20 week ultrasound that her brain was’t developing properly. I had to go back in a few weeks for additional testing, and discuss options, etc… thankfully, she ended up NOT having the issues they originally thought. It was the worst few weeks of my life, wondering what “could” happen and what our options would be for our little baby. So scary. Definitely feels like a hard punch in the gut.

  54. I had a child diagnosed with an autoimmune disease this year and another child (with autism) we’re still running tests on to see if he is having seizures that make him vomit and pass out. I deal with a hard diagnosis by crying, then venting, then writing. It’s hard. The unknown ending is hard. The path that lies ahead is hard. I’m so sorry that you have to deal with this and I hope you find a way that works for you to deal with the stress this kind of diagnosis can cause. My thoughts and prayers are with you.

    • aimeefauci@gmail.com says:

      I am so sorry. You are dealing with so much pain. When my daughter was going through her first year of life with constant surgeries I kept a journal and wrote down everything! I did this so I could remember because I knew my mind was not in my body during each surgery and it helped me remember when it was time for dr appointments. Good luck and big prayers to you and the kids.

  55. Whew I am glad everything turned out okay. I have had a miscarriage so I am always afraid of going to the doctor and finding out if something is wrong with the babies…even when they are out of your womb. I always tell my friends that everything happens for a reason and to appreciate even the smallest of things.

  56. It is SO SCARY to find out that your baby has any kind of medical issues. So glad she was spared from other issues. Thanks for sharing your story. Knowing you aren’t alone always helps.

  57. This news must have been a shock. I’m glad that you guys found the right care together.

  58. You know something is wrong when the tech has to get a doctor. It’s an awful feeling.

  59. Robin (Masshole Mommy) says:

    I can not imagine having to get news like that – in that way. Your daughter is lucky to have you guys to take care of her.

  60. This is such a beautiful story and I just really love that you shared this small part. My brother was born with Down Syndrome 28 years ago and my parents didn’t know before he was born. I’ve always wondered about this and I’ve come to the conclusion that there’s just never an appropriate time to learn that something is wrong with you sweet babes. They are such little miracles! Visiting from #sitsblogging

  61. Incredible story! I am so glad everything turned out fine. Makes you appreciate the small things in life for sure.

  62. So glad that everything was okay. Having had to have an amniocentesis during my pregnancy, it it so stressful. The test was nothing compared to the mental anguish.

  63. What a blessing that there was nothing else wrong with the baby! Im not a mom, yet, but these kinds of stories truly show the bond between a mother and her baby!

  64. So glad that all is okay with the baby. I truly understand the ups and downs of this sort of thing. I didn’t find out until a week after my daughter was born that she has sickle cell disease (a blood disorder). Best of luck to you guys!

  65. What a praise that the Lord spared her from anything else. WOW! So glad for you. Can’t even imagine what that sinking feeling must have felt like.

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