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Hi.. my name is Maria and I am 20 weeks pregnant with a precious girl we will name Arianna.. yesterday we just find out our angel have a CHD called Tricuspid Atresia (after an extensive and very detailed ultrasound)soon after our OBG perinatal especialist referred us immediately to a Pediatric cardiologist who confirms the diagnosis. We are still in shock... there is a lot information to be process and for my relief thank God we found out this in a very early stage and the doctors are going to prepare an specif plan of attention and follow up as soon as our girl is born which gave me lots of hope that we will overcome this with the love of our closest family... Today I did the Amniocentesis and everything went well so far and we have to wait for the results in 2 weeks to see all the genetics results are related to this CHD. I had to admit that my Husband and I we are trying to remain positive but I would love to hear from the community stories of families that have been through the same and provide us some advice for what the future would hold for our family... my big concerns are related with the types of disabilities that comes along with any CHD and I would like more clarification About it and also how to cope with upcoming surgeries.... I am working on a list of questions for my next app. With the pediatric cardiologist cause he will start monitoring our girl every month until my due date.... thanks so much in advance e for your time and God bless you
AHAASAKatie, December 31, 2018 9:50am EST
Thank you so much for trusting us with what is happening in your world. I can give you the patient education resources that we have on Triscupid Atresia and other single ventricle defects. We also have quite a few CHD Moms who can share their experiences with you as well. Please know that we are here to support you through this. Best Katie
Lyoakam, January 1, 2019 4:16pm EST
Hi Maria! Congrats on your sweet baby girl! I'm sorry you were thrown this tough obstacle to over come during your pregnancy but I love your positive attitude and I hope you can continue to be positive because it will definitely help you through the whole process and to be strong for your sweet baby! My son (now 6 months) is a Hypoplastic right heart Pulmonary atresia intact Ventrical Septum. The world of CHD is very complex and everyone's experience and journey is a bit different so go into with a open mind and let your baby write her own story. Some of the best advice someone gave me when I was where you are (new diagnosis, pregnant, hormonal and terrified) was to try to just enjoy your pregnancy and just be your babies mom bc that is what she really needs now, is a mom (not another doctor, nurse, etc). She is the best she can be inside of you so just try to keep her there!
Anyways, as far as Tricusp Atresia goes; it typically goes along with other defects. Fir starters some things you will want to alsoaknow is if there is any evidence of a Hypoplastic right Ventrical (like our son has), pulmonary valve Atresia (no pulmonary valve either), pulmonary stenosis, atrial defect ("ASD" hole between atriums), ventricular septal defect "VSD"- hole between ventricals or transposition of the great arteries (Reverse connection of the arteries). Some are difficult to see at 20 weeks but it is something they will be monitoring at your many upcoming echos! Depending on what they see as she develops will help guide your "anticipated" course. But remember nothing is absolutely certain until she is born and things can and will change as time goes on. So, like I mentioned try to be flexible. Lastly, I'm not sure where you are from but find a hospital (if you are not already with one) that has a trustworthy CHD program and deliver there (no matter how far it is or what your doctors tell you.) Trust me. You don't want to be 2 hours post csection and being told your baby needs to be transported to a different hospital for surgery while you are stuck recovering else where. Get a insurance case manager and see what your options are. You may have to do some of your own work and phone calls to get the necessary approvals and advocate for yourself, but it's worth it .
Please keep us updated and we hope all goes well!!
tsmckinney, January 4, 2019 2:34pm EST
Maria – congratulations on your baby girl! My daughter was born with a VSD and a coarc of her aorta. We had no idea there was an issue until her two week checkup. You are so lucky they have diagnosed sweet Arianna’s issues and will be ready to take care of her upon her birth. I know what a shock it is to learn your child as a CHD. I know they have shared the link for information – there is so many great resources there. One question I too was concerned about after my daughters open heart surgery was disabilities or restrictions. We were very blessed that she came through the surgery so well and recovered beautifully. Sending prayers to you all.
BL1970, January 18, 2019 2:38pm EST
So glad you connected!
I am an adult survivor of three open heart surgeries. I developed an aortic stenosis when I was 2 months old, and was followed closely every six months for nine years when I needed my first surgery in 1968! Back then, just before the last dinosaur became extinct, there was very little cardiac surgery technology. So my changes of survival was measured in percentages; at nine years old, I had a 50/50 chance.
The GOOD NEWS is that cardiac technology has skyrocketed over the years, and infant and child cardiatric surgery, although not a walk in the park, but surprisingly routine.
Congratulations on your little one! Being afraid and anxious for her is normal for any parent, and I urge you to ask and receive, counselling for the both of you. This is a highly stressful time, and it would be helpful for you to be able share it with professionals, mostly because while I know doctors are sympathetic, they are rightly so focused on your child and the upcoming procedures available.
I speak from experience. I had open heart in 1972, and again in 1976. At no time whatsoever did my parents and I have the emotional support or counselling. It really just did not ocurr to professionals then that heart surgeries are traumatic experiences. Today, happily, emotional services are available; just make it part of care before, during and after surgery.
I sense that you are getting some kind of support, and I also think you all are doing great. A scary emotional time, I know, but I am a big advocate of getting emotional support from others besides these awesome surgeons.
FYI in 1972 there were only a HANDFUL of heart surgeons with the skill to properly implant the Aortic valve I needed.
We have come a long, long way!
As for your precious gift, having survived three surgeries with the same tools used to bring Frankenstein around ( kid you not) I think and pray that you daughter will do fine.
She is blessed to be coming into a modern world.
God Bless and congratulations!
DolphinWrite, February 23, 2019 10:32pm EST
Maria, so happy that you are having a baby. Thank goodness the doctors know ahead of time and you can prepare for the future. Medicine is much better these days. Prayers for you, the baby, and your family. God bless.