This is a guest post series from Hellobee reader C.
At 3 months-old, we handed our baby over to a surgeon for open-heart surgery. It was our best hope for him to live to see his first birthday. Our sweet baby boy was born with a hole in his heart called a Ventricular Septal Defect (VSD). His congenital heart defect went undiagnosed during my pregnancy. It was not detected after his emergency C-section delivery. It was not diagnosed at his newborn well baby check. This is all too common and a reason why it is the number one cause of birth defect deaths. We hope that by sharing our story we can help other new parents learn the signs of CHD, and have hope to overcome this scary medical diagnosis.
My pregnancy with my son was similar to my first pregnancy with my daughter. I had all the same symptoms. I was so excited to go in for my 5 – month ultrasound to find out the gender of our baby, forgetting that the purpose of the visit is to perform an anatomy scan. During the scan the technician kept moving over the same area and looked intent. I assumed she was having difficulty seeing the baby’s gender. Then she calmly said I would need to have a second, high resolution ultrasound. After a lot of coaxing, she explained that she saw an anomaly with his heart.
She was a very nice woman and told me not to worry, and that we were having a baby boy. I never did see my OB/GYN that day, and I now know that I should have been sent to our local Children’s Hospital for a fetal echocardiogram. Later that week I had the second ultrasound. Again, it was just with a technician, and the radiologist was sent the images to review. I received a phone call the next day and was told everything looked fine. We were so relieved. My husband and I finally had a chance to be excited about our new baby.
At 37 weeks pregnant I was measuring small and another ultrasound was done; nothing was detected. At 38 weeks, I went into labor. My labor progressed similarly to my first pregnancy. I received an epidural and shortly after I felt the contractions intensify. That’s when everything went wrong. The baby’s heart rate crashed and my blood pressure shot up. The nurses were trying every intervention they could, and finally gave me a shot to stop my labor. I was rushed to the OR so quickly the IVs were ripped out of my arm. Once the contractions stopped the baby’s heart rate briefly stabilized, but the contractions started again. They had to get the baby out fast. It felt so chaotic.
When he was born, he cried and amazingly his APGAR scores were fine. I was sent to the recovery room and the nurses brought in my baby. From the first moment I held my son, I felt so connected to him but I knew he was struggling. He seemed lethargic. The nurses thought he was lethargic because of the many doses of pain medicine given through the epidural for my emergency C-section. However, with my daughter’s labor I had repeated doses of pain medicine through an epidural. Her labor was incredibly difficult with three and half hours of pushing due to her being in the posterior position. Yet, her heart rate had been strong and stable throughout labor. She was very alert when she was born. The epidural just didn’t seem like the reason he would be so lethargic.
I wish I had known to ask if my son was given a pulse ox test. This is a small monitor they put on the baby’s toe or finger that tells their blood oxygen saturation level, and can be one of the easiest indications that the baby has a CHD. Unfortunately, not all states require this test.
In the hospital I told the doctors, nurses and lactation consultants that he could not stay awake to finish a feeding. They seemed assured that because I had breastfed my first baby I would figure it out. With my daughter I knew that I was the one struggling with breastfeeding. This time I knew it was my baby struggling, but I didn’t know why.
Once we were home, we began to notice more symptoms. He rarely cried and slept all the time. At first we thanked our lucky stars that we were avoiding colic. Our daughter had been colicky for the first five months. Then he developed what we thought was a cute grunting sound. Grunting is a red flag for CHD. At his newborn physical our pediatrician explained that newborns can have some weird breathing patterns. However, he was gaining weight, and that is the hallmark of good growth and development, and so his symptoms were continuously ignored. She listened to his heart and did not hear a murmur. This is the scary part about CHD. Many babies are not symptomatic until 4-6 weeks old, after their circulatory system has fully transitioned from being reliant on the placenta.
One night, after watching his belly retract in and out quickly during a rapid breathing spell, his nostrils flair and head bob, my husband and I became convinced something was wrong. We brought him into our pediatrician’s office the next day and insisted something was wrong. I am so grateful that she took the time to listen to us. She did a very thorough examination and after repeated checks, she finally heard the faintest heart murmur. Many pediatricians dismiss this as a flow murmur which is completely normal to have. Usually, a baby with a hole in their heart has a loud murmur. However, a very large hole in the heart can mimic the sound of a flow murmur.
We would later find out that babies show up blue at the ER, and many don’t survive because a pediatrician dismissed a flow murmur. We were referred to our local children’s hospital the next day, New Year’s Eve, for an appointment with a Pediatric Cardiologist to evaluate his heart murmur. Little did we know the tough battles that lay ahead for our sweet baby boy.
wonderful pomelo / 30692 posts
grapefruit / 4731 posts
I’m so glad you were so vigilant about your son! You said something was wrong and you fought to have it checked.
This type of thing still seems pretty rare and so most people think it couldn’t happen to them. It’s tough when it does happen to you. *big hugs*
Thanks for sharing your story.
cherry / 196 posts
Sounds so scary. I’m glad you’re getting this story out.
cherry / 235 posts
Thank you for sharing your story.
My second son was also born with a VSD. Like you it went undiagnosed during my pregnancy and was not caught during our hospital stay. It was only detected after not gaining weight, nursing/feeding issues, a slight murmur being heard at his one week appointment, and our concern over his breathing. Even after it was first detected and an echo was done at the hospital there seemed to be no rush to see a cardiologist. Looking back on it now I should have pushed harder to see one right away. Instead I just relied on what the 'experts' were telling me instead of following my instincts.
Thankfully my son has a moderate size hole that did not require surgery, just medication and monitoring for the first year of his life. We go for his 2 year checkup with the cardiologist next month and I'm hoping for continued good news.
I'm so glad that you trusted your instincts and did what needed to be done for your son. And for you to get your story out so that others are aware that it can happen.
blogger / apricot / 431 posts
Thanks for sharing. Lil’ Pizza was born with VSD and PFO. The first doctor that saw her in the hospital (in same practice as the pediatrician I use), didn’t hear a heart murmur. On the day we were leaving, a different doctor (Lil’ Pizza’s pediatrician) noticed a heart murmur. Thankfully, the holes closed on their own after several months, but it is scary to think that it was almost dismissed. We made sure to monitor Baby Pizza more during my pregnancy and thankfully there are no cardiac concerns.
pomelo / 5220 posts
Wow so scary!
wonderful olive / 19353 posts
Oh my goodness!! So glad your pediatrician didn’t dismiss y’alls concern and was able to hear the flow murmur!! That’s so frightening!!
blogger / pomegranate / 3044 posts
How terrifying! And scary to have the trust we put in physicians shaken like that! I hope things have gotten a lot better for your little boy.
honeydew / 7504 posts
My son had an Atrial Septal Defect. His was not detected until he was 9 months old, when the pediatrician heard a murmur and referred us to the pediatric cardiologist. They watched it for 2 years before finally deciding to proceed with a catheterization device closure. Now that he’s had the surgery, it’s SO obvious how much his heart was weakened and how much it affected his energy level, activity level, mood…everything.
My 2nd pregnancy was carefully monitored – I had a fetal echo, and they did additional testing in the hospital and will monitor her heart sounds more closely due to D’s history.
guest
From the mama of another heart warrior, thank you for sharing your story! I am so happy to see more awareness being brought to congenital heart defects. We also did not find out until birth. Had a normal pregnancy and delivery. By fluke they took his pulse ox (not mandatory in Canada where I am – it really should be!!!) and found out that way. Was diagnosed with TAPVR and had his opens heart surgery at 6 weeks. He’s 9 months now and doing wonderfully.
Pregnant ladies – ask your ob/ midwife / etc for a pulse ox screening at birth!!! Thanks again for sharing
pomegranate / 3393 posts
Oh wow, thank you so much for sharing this.
honeydew / 7444 posts
Thank you for sharing. My brother passed away when he was 2 months old due to a heart murmur and failed surgery.
So glad that you put the pressure on your ped and hope that things have gotten better.
apple seed / 4 posts
Thank you for sharing your story. It can be hard to follow your instinct sometimes because we put so much faith in doctors especially for a new mother, it can be hard to wrap your head around things. So happy that you followed your gut and stood your ground. Sending hugs and lots of strength your way.