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July 2016 Moms
PleaseSendPicklesNow
member
A Thread For Congenital Heart Defects
PleaseSendPicklesNow
member
It's been a bad day. To make a long story short, I made a trip to Zika-infected parts of the Caribbean (with my doc's blessing) shortly before the disease made the news. Because of this possible exposure to Zika, I had an appointment with a high-risk maternity specialist today. They did an ultrasound to check the size of my son's head, and a blood draw to test for Zika.
Things did not go as we expected.
The ultrasound revealed that he has a HUGE head (yay!). But the tech kept taking pictures of other things. Finally, she turned off the machine and said, "I need to tell you something important. Honey, I am so sorry. There is something wrong with your baby's heart." She brought in a doctor who turned on the machine, looked around some more, and quickly agreed: They believe our son has a congenital heart defect called Tetralogy of Fallot. It's characterized by a hole between the ventricles, as well as abnormalities in the pulmonary artery. They said they could see both of these in the ultrasound. The condition requires open heart surgery, usually in the first six months after birth, and often a couple more surgeries in the child's teens and early adult years.
They told me a firm diagnosis will come after a fetal echocardiogram and additional ultrasounds examined by a pediatric cardiologist. Then the ultrasound tech gave me a long hug, and made a noise like she was holding back tears. Honestly, that scared me more than anything else.
The next opening for a fetal echo is almost a month from now. It's going to be a LONG month. And my husband's mom has terminal cancer. He doesn't have the emotional capacity to deal with this. If we get any more bad news, I'm afraid it will break him.
I am trying to look on the bright side: It's not certain yet. And we live in a city with a fantastic Children's Hospital that includes a great pediatric cardiology team. People travel long distances to bring their kids here for care. My parents are local and incredibly supportive. As are all of you. But I'm so scared. So I'm starting this thread so anyone else in this situation can unload, vent, commiserate, encourage, share information, and give creepy internet stranger hugs. (Ha.) If you've read this far, thank you. It makes me feel a little less alone.
Things did not go as we expected.
The ultrasound revealed that he has a HUGE head (yay!). But the tech kept taking pictures of other things. Finally, she turned off the machine and said, "I need to tell you something important. Honey, I am so sorry. There is something wrong with your baby's heart." She brought in a doctor who turned on the machine, looked around some more, and quickly agreed: They believe our son has a congenital heart defect called Tetralogy of Fallot. It's characterized by a hole between the ventricles, as well as abnormalities in the pulmonary artery. They said they could see both of these in the ultrasound. The condition requires open heart surgery, usually in the first six months after birth, and often a couple more surgeries in the child's teens and early adult years.
They told me a firm diagnosis will come after a fetal echocardiogram and additional ultrasounds examined by a pediatric cardiologist. Then the ultrasound tech gave me a long hug, and made a noise like she was holding back tears. Honestly, that scared me more than anything else.
The next opening for a fetal echo is almost a month from now. It's going to be a LONG month. And my husband's mom has terminal cancer. He doesn't have the emotional capacity to deal with this. If we get any more bad news, I'm afraid it will break him.
I am trying to look on the bright side: It's not certain yet. And we live in a city with a fantastic Children's Hospital that includes a great pediatric cardiology team. People travel long distances to bring their kids here for care. My parents are local and incredibly supportive. As are all of you. But I'm so scared. So I'm starting this thread so anyone else in this situation can unload, vent, commiserate, encourage, share information, and give creepy internet stranger hugs. (Ha.) If you've read this far, thank you. It makes me feel a little less alone.
Re: A Thread For Congenital Heart Defects
BFP 2/19/15 • MMC found at 9 wks • D&E at 11 wks (age 36)
BFP 8/29/15 • CP (age 37)
TTC#2 since May 2017
BFP 10/18/17 • MMC found at 8 wks • Misoprostal at 10.5 wks (age 39)
BFP 2/16/18 • CP (age 39)
BFP 4/13/18 • CP (age 39)
BFP 5/07/18 • MMC found at 10.5 wks • D&E at 11.5 wks • Testing showed it was a girl with Trisomy 22. (age 39/40)
9/5/18 Diagnosed with diminished ovarian reserve (4-5 follicles, one ovary had none and was very atrophied)
RE says the low egg count is likely causing my recurrent pregnancy loss. Less eggs results in more aneuploidy.
BFP 9/24/18 • CP (age 40)
DD #2: EDD July 2016
Bad news on top of difficult circumstances is stressful and anxiety provoking my thoughts and prayers are with you all. Don't hesitate to reach out if you need it!
I've spent the last hour reading your responses and researching everything you all have been through or recommended: Ventricular problems including VSD, cardiomyopathy, online TOF support groups. I now have SO many windows open, ha! There is so much to learn.
@lgem4 Thanks for coming out of lurkdom! Stories like yours are really encouraging and help more than you realize. I'm glad you are well now. Do you have an audible murmur now?
We are are DEFINITELY getting a second opinion from the pediatric/neonatal cardiology specialists at our local Children's Hospital; the appointments are already made. The tentative, not-official diagnosis is that our son may have the same type of ventricular hole that you do, plus three other structural problems that are called "Tetralogy of Fallot" when they all happen together (Tetra- means four, four defects at once). But if he has a ventricular hole that gets smaller on its own, like yours did, we will be THRILLED!!
@carrieandroy Hugs to you and your husband, good luck to your baby, and may I ask you a bunch of questions?
The online support groups some of you mentioned are so encouraging, with so many happy ADULTS with full lives telling their stories about being born with TOF--yay!!!! Right now I'm just trying to accept the idea of letting someone perform open heart surgery on my tiny, fragile infant. It seems like a brutal way to welcome him to the world, and the thought makes me cry. A lot. Once I get over that ugly idea, I'll be ready to handle whatever comes next.
Meanwhile, my sweet husband is having elaborate daydreams about getting into fistfights with incompetent doctors and nurses. Men are certainly different than women. (eye roll)
One of my friend's sons was born with a congenital heart defect. She gave birth in the hospital that is attached by a corridor to the Children's Hospital here. Her son had open heart surgery when he was a day old and has not needed another surgery until last spring. He is almost 13. He does have some restrictions in terms of contact sports but other than that, you would never know that he had any issues at all. I'm glad that you're in a place where you have fantastic medical care and hopefully will be able to give us a good update after next meeting with the specialists.
@PleaseSendPicklesNow
I am so sorry you are having to go through this. I completely understand how impossible it feels right now. There is nothing that will lessen the anxiety with something like this. However, I will tell you, when things seem impossible, miracles happen. When my mom was pregnant with me she was told that I had a hole between my two ventricles, my pulmonary artery was malformed and that I would not survive birth. They also told her that most of my intestines were forming on the outside of my body and I had a 23% chance of survival once I was born. I also had Sidus-Inversus and poly-splenia. She had to go through session after session with a psychiatrist who continually told her that for her mental health, she needed to abort her baby.
I was born a healthy 8lbs 6 oz, 19 inches long. My intestines were INSIDE my body, (although, I did have to have intestinal surgery right after birth since my intestines decided to become one giant knot) and my heart pumped away. I did have to have open heart surgery at age 2 to fix the hole and adjust the blood flow, but I am now 23 years old and pregnant with my first baby. There are very few things that I am limited in doing. I am NOT allowed to be a heavy weight champion, or go sky diving, but I AM allow to love, marry, have children, and bring happiness to my mom. Which is exactly what your little love will do with you.
If they were able to help me, in 1992, imagine what they can do for your little one in 2016. Medicine is amazing. And even more so, God is amazing. I will be keeping you in my thoughts and prayers. Please keep us updated on your little one!
-a heart at peace gives life to the body-
July16 JULY siggy challenge
For other, this is a great overview from NIH (national Institute of Health ) about TOF.https://www.nhlbi.nih.gov/health/health-topics/topics/tof
DH: 32
Married 7/18/15
1st born at 35+4 on 6/6/16
Team green turned BLUE!
2nd born at 38+6 on 8/30/18
Team green turned PINK!
Due with #3 on 6/6/20 Team Green
BFP 2/19/15 • MMC found at 9 wks • D&E at 11 wks (age 36)
BFP 8/29/15 • CP (age 37)
TTC#2 since May 2017
BFP 10/18/17 • MMC found at 8 wks • Misoprostal at 10.5 wks (age 39)
BFP 2/16/18 • CP (age 39)
BFP 4/13/18 • CP (age 39)
BFP 5/07/18 • MMC found at 10.5 wks • D&E at 11.5 wks • Testing showed it was a girl with Trisomy 22. (age 39/40)
9/5/18 Diagnosed with diminished ovarian reserve (4-5 follicles, one ovary had none and was very atrophied)
RE says the low egg count is likely causing my recurrent pregnancy loss. Less eggs results in more aneuploidy.
BFP 9/24/18 • CP (age 40)