Issues with the baby...

[McMandy]

This spring has held... A LOT. My (6 yo) daughter started having seizures one night- and we found out she had a mass in her brain. It was thought to be a tumor, but now we know it's an inflammatory mass, but other than that, the Drs don't know WHAT it is or how to treat it. (That was late March.)

Saturday, we had an U/S to check up on the baby and found we're having a girl. I noticed the tech seemed to really scope out the heart longer than normal. She also called my MW immediately after the visit, which I thought was strange. I mentioned this to my Mom, who said it was probably nothing.. and my SIL (who saw the DVD the tech sent home with us) agreed that it did seem a little "odd".

Monday evening, my MW called me and said there was an issue with the baby. I immediately said, "It's the heart right."

She said it is a 3-chambered heart. I don't know which chamber is missing (I didn't know to ask that at the time)... but I do know that we didn't see this coming.

The baby SEEMS to have a steady heartbeat. She is right on with her growth. She was sucking her thumb and "breathing" in the U/S.

We had four miscarriages previous to this pregnancy (all 11 weeks and previous). We have three other children (none of them seem to have any heart issues).

Has anyone else dealt with this? I realize now that my dream of a homebirth (this would have been our second homebirth) is slipping away. I see the future struggles, and it breaks my heart.

I know of good stories where the child survives and thrives, and stories of where the child dies before or shortly after birth.

Whatever the case, there will be NO early termination.

[Monkey Keeper]

I could not read and not respond. I can only imagine the fear and bewilderment you're dealing with right now. You and I share an EDD, making your situation all the more poignant for me. I will pray for you, our family, and the baby you are carrying.

[MaerynPearl]

wow, this spring has been tough for you.

I really hope everything turns out for the best!

[RedOakMomma]

In our first pregnancy, the ultrasound showed heart abnormalities...each of our boys had growths on their heart. A genetic disorder called Tuberous Sclerosis Complex was suspected, and that's what turned out to be the case.

It's very hard to adjust to the news of something being wrong, and my heart goes out to you. One thing I'd like to stress is that the future SEEMS so much scarier than it actually IS. I've heard this from many moms of children with medical problems and special needs. To try to explain it better...when you're standing where you are now, and everything is new and unknown, you have an entire future on your shoulders. That weight, that pressure and fear/sadness/uncertainty is so heavy. When the baby is born, and when you start life with her, you're only going to have one day at a time, one moment at a time on your shoulders. Yes, some days are hard. Yes, you still have to adjust/deal with/plan about the future, but it's just EASIER once you're living the moment-to-moment interactions with your child. You touch them, they touch you, and life seems so much more normal even when in your mind you know it's never going to be "normal" again. Day to day living with special needs and medical problems is do-able. Even enjoyable. I love my children, and I love my life.

As far as your birth, s again. Yes, you'll probably be risked out of a homebirth. BUT, as they monitor her and learn more about her heart, you may have more options than you think. Our sons were closely monitored during my pregnancy, and in the end they allowed me to have a natural vaginal birth. True, it was in the operating room (or at least the pushing was), and yes, a whole team of NICU staff and cardiologists were standing by, but when you're giving birth and pushing you're in the zone...I could have been on a bed in a Hilton Suite, or on a bed in a stainless steel operating room and I wouldn't have known the difference. As it turns out, our children were born and didn't need any medical assistance at birth. It was joyous, and we never expected it to be like that.

We've gone through a lot since then, and at times it hasn't been easy, but we've pulled through and grown so much as individuals, partners, and as a family. Your heart is breaking right now, and you have EVERY RIGHT to feel sad and afraid or anything you want to feel, but just be prepared for your heart to feel joy again, and for life to turn out okay. Maybe different, but definitely okay. The struggles are not as scary as they seem.

I hope your follow-up appointments and other news will bring hopeful news, and that this little one is born healthy and beautiful into your arms.

[RedOakMomma]

http://www.hannahsheart.org/ourstory.html

This woman started a foundation after her little girl was born with a three-chambered heart. Her daughter had surgeries to repair her heart and is doing well, it seems.

[MaryLang]

My dd had a 3 chamber heart.
In her case it was a Septal Defect (the tissue between the upper (atrial) chambers was missing. I suppose another diagnosis for a 3 chamber heart could be some type of hypoplastic defect, maybe there are others. But either way, I know I was a nervous wreck when we found out after our 20 wk U/S. Please do not GOOGLE anything! In fact I feel bad giving you any "names" of things. Do not google! Wait to hear from your doc, they will probably refer you to a fetal cardiologist for an fetal echocardiogram, this is just a high tech u/s and they will tell you more. It is VERY VERY RARE that a baby has something were they will die before or after birth. Stay positive about it. Even babies born with 1/2 a heart can be fixed these days, they can fix almost anything! My dd did need an open heart surgery around 15 mnths of age when she started slipping into congestive heart failure, they did the surgery and she did great through it. It was not a walk in the park by any means, and she has since developed a "new" defect we're watching, but the original surgery took care of the Septal defect and she is a happy healthy little 4yrold. And yes, your probably right that a homebirth may not be possible, you may need neonatal on hand to get a good check on her after birth. PM me if you want to talk about any of this. And Congrats on your little girl!

[AFWife]

I can offer you another story of sorts...a second cousin of mine was born with his heart on the wrong side, upside down, a leaky valve,and it only had 2 chambers (I think...it didn't have enough I know for sure) He had surgery to correct the chamber issue and leaky valve when he was 3...they said that the rest was fine.

He came through with zero issues and he's a happy, healthy boy now...that was several years ago.

[McMandy]

Thanks for all your encouragement.

From what I understand of any of the 3-chambered heart issues is that blue blood and red (oxygenated) blood mix- and so, right now, my body is providing that oxygen and all is fine. She's growing strong and healthy because she is able to rely on my body.

That does give me a lot of comfort knowing that I really don't have a lot to worry about while she is in the womb, and that the rest of her will likely be healthy and able to give her the support she needs should our fears be confirmed.

Its hard to wait for the answers when you really want to prepare yourself for what's coming, you know?

[BreakfastyMichele]

Disclaimer: I wouldn't recommend this book to other pregnant mamas.

I recently read Walk on Water: The Miracle of Saving Children's Lives, by Michael Ruhlman. It chronicles the work and trials of a pediatric heart surgeon.

I should not have read it while pregnant, because I am now more aware of cardiac issues but I recommend it for you since you know your baby has a three-chambered heart. The fact that so many conditions are easily addressed immediately after birth, and the great strides doctors have made in the past few decades are very encouraging.

If you're like me, you want a lot of details about what's going on in your uterus. . .and you know Google is the devil. I think you may find the book uplifting in many ways.

My thoughts are with you right now!

[mclisa]

I hope your midwife set you up with a perinatologist who can re-ultrasound the baby and her heart. I think you need an expert to look more closely at the heart.

[mamabearsoblessed]

I am Praying all will be well, Mama.
One of my cousin's sons was born with a 3 chamber heart and other defects and underwent surgery as well. He is a healthy, perfect, active 7 year old boy!!
Focus on the good, and listen to the Mama who said 'don't google, but for more info from your docs". Things I have carried have been faaar heavier because I did my own unlimited, obsessive 'research' and there are so many stories out there. But they are not yours, yours will be a triumph.
Much love and prayers for your family and precious babe.

[Just1More]

Oh, McMandy. God is so much bigger than this.

All the statistics, facts, and figures are nothing in the face of prayer.

I'll be one praying for you. s

[claddaghmom]

[McMandy]

Thanks so much for your comments.

I am going to be seeing a specialist in May (early May, I hope). I had to deal with my insurance and therefore, can not see him until then.

But, I found that there really is no hurry right now, as my body is providing for the baby, and therefore she will continue to grow healthy and strong.

That is a comfort! I am SO eager to find out whether God has already healed and completed her little heart. I need answers, and it's hard to wait!

We feel like we've done so much waiting the last couple months- first waiting to find out what the mass was in DD's brain (she's nearly 7yo).. and we still don't know much about it other than it's not cancerous! Now having to wait on this.. it's hard.

I wouldn't say Im fearful, I'm just ready for some answers.