Tetralogy of Fallot - Hysterical - Updates on page 3 and 5

[TMonster]

I am hysterical.
I spent almost 8 hours in the hospital today.
I was supposed to go for a followup to the anatomy scan I had 2 weeks ago, where everything was fine and this time a different tech discovers a heart defect. Tetralogy of Fallot. I had 2 fetal echos on 2 different machines and spent a long time with the pediatric cardiologist.

Under the best circumstances as soon as I deliver they will take the baby from me, give her an IV with some drugs and place her in nicu where she will then have to have heart surgery. After about 6-9 months she will need heart surgery again and then most likely 3-6 more times until she is an adult. She will also have some exercise restrictions, but I wasn't planning on raising a world class athlete.

In the worst case (assuming other complications don't arise or she doesn't pass away) she has DiGeorge Syndrome which from everything I read and everything the doctors have told me is pretty horrible. A high risk of cognitive impairment, 40% develop schizophrenia and there is also a very high risk of other psychological and physical disorders.

I have to meet with genetic counseling tomorrow morning to schedule an amnio asap to find out if she has DiGeorge. DH has already said if she does its her or him but this will ruin his life and he can't deal with it.

I can't stop crying. Why can't I just have a normal pregnancy? All I wanted was for everything to be fine, to pass my little watermelon and press her up against me and feed her and change her and take her home and stay up all night. Instead under even the best circumstances I am going to be robbed of that and have a child who will need multiple surgeries throughout her life and at worst.... well... it will be much worse.

 

[Louppey]

I don't even know what to say, massive massive hugs honey

 

[Nicolalove353]

I am so sorry. I really don't know what to say other than take one day at a time. You know she has the heart problem so I guess try and start there to process all this information. I know a few people that have had heart surgery when they were young/babies and as hard as I am sure it was for the parents and baby to get through, they did and they are happy adults now. I am praying for you that your amino comes back negative for that disease. I don't know what to say about your husband. That us really horrible for him to think let alone tell you to choose. It is never easy raising a special needs child but families do it all the time and live happy lives and love their child unconditionally. No matter what the news is of your test results, I hope your husband comes around and mans up to be the strength you need to get through this and to be the daddy your child deserves. I will be praying for you.

 

[ginab]

One of my very good friends 3 year old boy has TOF and he is also a friend of My daughters, ive known him since he was born and they didnt detect it until he was a few months old BUT

can i just say, although i know its a massive shock right now ive been through it with her and so far he's had one heart op and it went very well, she's a single mum and she got through it and he is now a very normal 3 year old with hardly a scar to think of.

If you want me to get her to contact you or if you want to chat with someone about it and the procedures at any point let me know as she is such a lovely girl and they got through it and you would never even know he had TOF. These heart surgions are amazing.

Let me know if you want to talk about it more and all i can say is..its not as bad as you think it will be.. you will also be shocked at how you just deal with it and how strong you are and you will get through it. xx

 

[Proserpina]

In the worst case (assuming other complications don't arise or she doesn't pass away) she has DiGeorge Syndrome which from everything I read and everything the doctors have told me is pretty horrible. A high risk of cognitive impairment, 40% develop schizophrenia and there is also a very high risk of other psychological and physical disorders.

I have to meet with genetic counseling tomorrow morning to schedule an amnio asap to find out if she has DiGeorge. DH has already said if she does its her or him but this will ruin his life and he can't deal with it.

This was my daughter when she was born:

https://i1299.photobucket.com/albums/ag66/ProserpinaPomegranate/198602_1016261332666_8841_n_zps5342a593.jpg

This is her today:

https://i1299.photobucket.com/albums/ag66/ProserpinaPomegranate/423223_3200399174747_119796442_n_zpsbda81ed3.jpg

She has DiGeorge syndrome, aka 22q11.2 deletion syndrome, aka velo-cardio-facial syndrome (it really has a lot of names).

She's a wonderful, joyful, adventurous little girl. She just finished first grade today. She's in my bedroom right now, playing Minecraft on my desktop. She loves My Little Pony and Brave and Portal and all kinds of things that lots of little girls love. She sold 138 boxes of Girl Scout cookies this year and just bridged from Daisy scouts to Brownies.

Yes, she has cognitive problems. Her IQ was estimated at a 70. She's partially serviced by the special education department of her school. She has severe ADHD (and has been doing wonderfully on Adderall, btw). She's had four surgeries in her life (2 on her cleft palate, 1 on a large umbilical hernia, and dental surgery due to severe tooth decay). These things are all challenges, but she has a wonderful quality of life.

I'm just telling you all of this so that you know that all is not lost if things are positive for DiGeorge. I haven't been through what you're going through on the Tetralogy of Fallot---my daughter just had a ventricular septal defect which closed up on its own---but you can get through this. DiGeorge is really all over the map in terms of how bad it can be.

I know what you mean about just wanting your baby to be healthy. I was 24 when I had my daughter, and I lived in Utah. I knew so many families that had tons of healthy kids, and I just wanted my one little girl to be okay. I was like, "Why does my one little daughter have to have these problems?" I don't know the answer to that question, but I know what that's like.

I've read up a lot on DiGeorge and its symptoms over the years. If you need someone to talk to, feel free to message me. Really hoping the best for you and your little girl.

 

[LadyMuck80]

Proserpina: You have a lovely daughter and you sound like you're a wonderful mother.

TMonster: You are in shock as is your DH. Don't make any decisions yet. As a pp said, take it one step at a time. Easier said than done. Remember, we are all here to hold your hand...please use us to vent to anytime.

 

[Foxy37]

im sending hugs now as there are no words that will make a difference to how your feeling right now . As the other ladies have said take one day at a time . Prosperina she is beautifull xxx

 

[Brz04]

I am so sorry...sending hugs and prayers your way

 

[bekkie]

there are no words... and more ... keeping you in my thoughts.

Beautiful daughter Proserpina!

 

[zanDark]

Oh sweetie I wish I could say something to make you feel better...all I have is lots of hugs for you and hope that everything will be OK for you and your LO

As far as your husband goes...while what he said was terrible, it could just be the shock talking...he's scared too, and might not be able to cope with it properly without saying things he doesn't mean. I hope he comes around.

Prosperina your daughter is such a lovely girl

 

[BubsMom17]

TMonster - My heart breaks for you. I have no words, I wish I did. I am so sorry.

 

[TMonster]

Thank you everyone. I have a terrible migraine. I am terrified about the amnio. I don't know how I am going to relax until I get the results back. I am just a mess. Even the best case scenario is just surreal right now.

 

[Baby Birds 12]

TMonster, I know exactly what you are feeling except 12 and a half years I ago I did not know my son had Tetralogy of Fallot with an absent pulmonary valve until he was born. Yes, it was scary and heartbreaking to watch everything he had to go through to get where he is today. He had his first open heart surgery at 4 days of age, then at 1 and a half, and then at 4 and a half. We are currently waiting to see when his next will be....within this year. He has a donor pulmonary valve that won't grow with him which is why he must have open heart surgeries to replace it. I will tell you he plays soccer year round. Just no contact sports. Yes, he wears a chest guard but besides being alittle small for his age, you would never know he has a congenital heart defect. My best advice is learn everything you can about TET....know symptoms to watch for BUT most of all treat your baby like a normal baby....the best advice I ever got from a nurse. My son doesn't feel different from the other kids and acts like a typical 12 year old...the really good news with medical technology is within 5-10 years the pulmonary valve wil be able to be replaced in cath lab during a cath procedure which means no more open heart surgeries!! Please message me if you ever need to talk....thinking about you and your fam xxxx

 

[adopim]

I have no better words of encouragement but couldn't read and run. Sending lots of

 

[Proserpina]

Thank you everyone. I have a terrible migraine. I am terrified about the amnio. I don't know how I am going to relax until I get the results back. I am just a mess. Even the best case scenario is just surreal right now.

It's perfectly okay to feel the way you feel. Panic flew through my brain the very first time the geneticist told me my daughter might have DiGeorge. "What the hell is that? Is it serious? Will she die? Will she be riding the short bus her entire life?" Those were all questions that ran through my brain, and some of them I blurted out then and there.

Just focus on what you do know. You do know (they are certain, right?) that your daughter has ToF, so you will need to deal with that. You don't know that she has DiGeorge. There is no need to panic on that just yet. Take whatever time you need to grieve and adjust.

I did an amniocentesis on this pregnancy, btw. It's not nearly as bad as it sounds. Chances are in your favor that everything is going to be okay. (My thread on my amnio was here.)

My heart goes out to you. I'm just a stranger on a message board, but you and your daughter will be in my thoughts and prayers.

 

[Glitter_berry]

Oh honey. I am so sorry to hear to your news. And I hope you get the most positive outcome possible.
Prosperina your daughter is gorgeous and sounds amazing xoxo

As for your husband, he is probably just in shock and regret his words when he has come to terms with things. It in no way makes what he said okay, but hopefully he adjusts soon and is a big support to you. Xoxox

 

[steph.]

Tmonster I am so sorry you are going through this. We all want our babies to be healthy and lead a full life and when we find out this may not be the case, our heart breaks.

I have some idea of what you are going through because about 3 weeks ago I got told our baby had a 1:20 chance of a chromosomal abnormality. Completely devastated doesnt even come close to how I felt, my perfect world had been shattered. All the possible scenarios ran through my head like a film : my baby suffering, being ridiculed, dying, something happening to me, my daughter being left as carer. Me and my husband also had the awful conversation of what we would do depending on what diagnosis we got, a conversation we never thought we would have. I went for an amnio, and the procedure itself is fine, honest. They cleaned my belly and put a needle in. I closed my eyes and it was over in 2 minutes. I really trusted the doctor carrying out the procedure, he assured me the miscarriage rate is much lower than the stated 1/200, and is similar to the normal miscarriage in the 2nd trimester. The waiting for the results is the worst part. I got the FISH results two days later which was negative for the three main trisomies, but we are still waiting for the full report.

I dont know much about di George syndrome, but i briefly worked in a paediatric cardiology department and saw many TOF babies and children. It will be scary to see your baby go into surgery, but she can lead a normal life. She will be able to play, have friends, get a job, find love, have children- everything that makes a life complete and happy.

I will keep you and bubba in my thoughts and prayers xxxx

 

[sheldonsmommy]

I'm so sorry hun. All I can say is your daughter is lucky because moms are the strongest people on earth.

 

[LovelyFay]

Hello, I complete understand what your going through . At my 14 week scan I found out my baby had a extemley irregular heart beat snd that she might have a chromosone problem my dr didnt expect her to make it to her next appointment.i had a 1:3 chance of down syndrome , turners or any other chromosone abnormality. At 17 weeks I had my amnio and was told my baby had a serious heart defect and was developing hydrops ( hydrops on there own are extremely dangerous) at 19 weeks I had a fetal echardiagram which confirmed my little girl had a deformed heart and had no hope.. Well I had the decision to terminate which I thought was what I wanted but once it came down to it I realized it wasn't. Well my little one is at 24 weeks now holding strong, after she wasn't expected to make it past 14 .. In my dispair to find answers I came across this website I hope it helps you. There are soooooo many ladies who have babies with a congential heart defect and they can help you soo much with any questions you make have. Don't give up hope the amnio isn't bad at ALLL. https://community.babycenter.com/groups/a5055/babies_and_children_with_heart_problems?pg=2

 

[HappyBump25]

I really don't know what to say except I'm so sorry to hear this.