- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Pregnant after 35
lilblt19
member
Update to Fetal Echo--not so good news
lilblt19
member
We had our appointment last Friday with the pediatric cardiologist. What I had thought or was hoping to be a quick appointment and my husband and I leaving with relief instead turned into a 2 hour appointment with the doctor shoving and jamming the ultrasound wand into my sides trying to get a good look at the baby's heart. And unfortunately, in the end, there would be no sigh of relief as we found out our little girl has a congenital heart defect called tetralogy of fallot and is going to require open heart surgery right after she's born or soon after depending on the severity of her condition. To say that we are in shock and devastated is an understatement especially since I had just had an appointment with my regular OB and she couldn't be more pleased with how well my pregnancy was progressing. Even though I had the Materniti21 test done and that came back normal, I think we are going to go ahead and have an amnio done to get a definitive confirmation that we are also not dealing with a syndrome as ToF is often associated with Downs or DiGeorge syndrome.
My husband and I are trying to stay positive and see this as another bump (albeit a mighty huge bump) that comes with being parents. I have been doing research online to learn more and while a lot of the stories give me hope, I'm not going to lie--many of the stories have left me crying. I am incredibly grateful for my doctors and the care that I have and that we were able to detect this early. I know medical technology has come so far allowing most babies with ToF to grow up living fully functional lives but I know a part of me is also grieving for the loss of the birth I thought I would have and trying to come to terms with our new reality. Our little girl is a fighter (we've already seen her feistiness in utero during all the u/s we've had) but really what breaks my heart is thinking about everything she'll have to endure after she is born. I know babies are resilient; I guess it's just me that needs to learn how to be more resilient. I'm sorry this got so long and if it sounds all jumbled but I feel better being able to get my thoughts written out.
This discussion has been closed.
Re: Update to Fetal Echo--not so good news
I have a friend who was born with this defect (or group of defects). She is now in her late 30's, has had 3 beautiful daughters of her own. Other than an additional surgery she had to have as an adult to repair a valve and monitoring she gets on a semi-regular basis with her cardiologist to make sure everything is fine, she has done great!!
I know this is a scary time, but information and knowledge is power. I wish for you peace and strength in what lies ahead.
I'm so sorry you're going through this. I can't even imagine how difficult it must be. Please keep us posted.
Melissa
Me:40 AMA, DH:36 0% morph, TTC#1;
BFP#1 4/2011, MMC 6/2011 11wks Trisomy 13;
BFP#2 11/2011, CP
FSH: 17.9, AMH: 2.2
IVF#1 w/ICSI: ER 4/3: 5R,4M,4F
ET 4/6 All 4 (1-8A+, 2-8A-, 1-3A) BFP#3
Two weeks of beta hell = Blighted Ovum
IVF#2 Aug/Sept: ER 8/27: 4R,3M,3F
ET 8/30 (1-8A+, 1-6A+)
Beta#1 9/10: 350; Beta#2 9/12: 796; Beta#3 9/20: 9155
Expecting Boy/Girl Twins! My babies were born 4/23/13 at 36w1d!
TTC 10/11. IUI 2/12. BFP 3/8/12. 4/26/12 missed mc. RE consult 5/17/12. IVF #1 ER 7/13/12 53R, 41M ICSIed, 32F, 8 5d, 6 6d blasts - all PGD/frozen. PGD results 1 normal M and 1 normal F, 1 maybe M. FET 9/6, transferred 1 F embie. Beta 9/15 BFN. FET#2 planned for 11/2012 put off until 2013. Surprise BFP 11/21/12!! My son was born on 7/24/13!
My Blog
I will say that I've seen a number of adults who have had ToF and lived completely full lives. They ended up in the hospital for other issues besides cardiac-- except for one guy who showed up for cardiac issues but that was because he was completely terrible to his heart (not watching his diet, not exercising, smoker, etc.)... Your girl is a fighter and she will kick this ToF in the nads!
<br /> My Ovulation Chart</a>
DD born 12.21.09, conceived w/ injects and IUI
TTC#2 since Nov 2011
BFP 2.6.12 m/c 6w5d | BFP 5.25.12 c/p
-Back to the RE-
3 medicated IUIs, all BFN
-Taking a break from treatment-
BFP 11.20.12 ~ EDD 7.28.13
My Chart
Over-40 parents...what we lack in vigor, we make up for with cunning.
I am so sorry for the news you got. I wish you courage and resilience during this tough time. A big virtual hug is coming your way.
BFP #1 - missed m/c 4.18.11 found @8w3d, d&c @13w
BFP #2 blighted ovum found 8.2011 @8w, misoprostol
BFP#3 - missed m/c 6.11.12 @ 9w3d, d&c revealed extra chromosome 15
BFP#4 8.10.12, DD born 4/26/13
My son was diagnosed with tof during my 20 week appointment. I had the amino test done to rule out the syndromes.
He had as significant block in his pulmonary artery. He also had the overriding aorta. The extent of his tof wasn't known until he was born.
I had a c- section in November. He was in the NICU for 2 weeks before his oxygen saturation levels dropped. He had open heart surgery when he was only 16 days old. After 10 days of recovery I was finally able to take my baby home.
There are amazing things they are able to do to fix this congenital heart defect. It is scary at first, but you have to stay strong for your little baby.
My little guy is 4 weeks post surgery and doing amazing.