Fetal Cardiac Defect

[Prensa]

I'm so lost! and lonely!

here's what's going on in a nutshell:

...found out I was pregnant back in March, decided to hold off telling our families until a few weeks had passed, planning for homebirth, decided to get a 20 week u/s to rule out any major surprises, but did not want to find out boy or girl, finally told our families...got the report and it said CARDIAC DEFECT, got referred to a specialist, he gave me his diagnosis: EBSTEIN's MALFORMATION, saw me again three weeks later, confirmed diagnosis, told me the tricuspid valve leak is SEVERE, wants to keep looking every few weeks until delivery, due in November...

I feel so isolated...like I'm taboo? No one has said congratulations (maybe third baby factor, maybe because it's hard to say congratulaions to bad news?) no one wants to talk about it (except my mom, but she's different, she's great) strangers are finding out I'm expecting (big belly now) like people at work or at the store but I feel like I shouldn't say anything about the defect to them, it's too much to bring up in a short conversation, but that makes me feel like I'm hiding it, ashamed of my broken baby, don't want to bring it up and ruin anyone's day...

this is so HARD!

I'm totally devastated about having to give birth in the hospital, my last birth was at home and I had every intention of being home for this one too, now not only am I facing "being under their care" but also all the unknowns: are they even gonna let me labor/deliver naturally? are they gonna hafta take the baby immediately? Will I get to hold him? Will I be able to nurse? How long will he have to stay there? will he have to go to a bigger hospital even further away? How am I gonna take care of my kids (two and four yrs old)while I'm at the hospital? none of these questions have answers right now, it's all "wait and see..."

I've read quite a few "heart blogs" and the first few weeks are so horrible, all the crazy NICU hospital stuff...so heart breaking, so emotional, extreme ups and downs...I think long term the whole thing is fairly good, barring any major complications a lot of the heart defects can be fixed (to a degree) by surgery and stuff and I see a lot of happy healthy toddler pictures posted but I still have to get through this other junk first and I feel sooo alone...

anyone got a hug?

[heymama1plus1]

So sorry to hear your news!

I'm a NICU nurse (unfortunately you'll be well acquainted with us soon). Sometimes the babies come out looking better than what the prenatal u/s showed. So keep praying.

As far as a natural birth, you should at least be able to go drug free if you go vaginal (I don't recall heart defects being a reason for c/s, but it's case by case if they can tolerate labor). They'll probably take him right away to the warmer and assess him, but if he's doing OK you should be able to hold him for a bit before he gets to the NICU. And push for kangaroo care when you're there. We let just about anyone kangaroo care on my unit.

And make sure you pump! He may not have much stamina to BF at first, but he'll need your BM more than the average baby.

Find out where he'll need to be inpatient and if you can, deliver there. It's hard on mom and baby to have to transfer after the fact. And find out if there's Ronald McDonald House (or similar) facilities nearby if it's far from home.

So sorry to hear you can't deliver at home. I can't imagine how sad that must be. Not fair

But I will say congratulations!! Even if it's not how you thought it would be, every baby is a blessing and he picked a great family to be born into. Your hearts are all big enough to make up for his!

ps-- is it a boy? You said you didn't want to find out... did that get ruined for you too?

[Mom2M]

I'm so sorry you are dealing with this! The uncertainty must be incredibly stressful. Did you get a chance to ask all the questions you have about the details at the birth?
I'm sure it mostly depends on how the baby reacts to everything but maybe you could get a better idea of how they have handled this before and what you can expect in your particular case.

I don't think it's like you are covering up the fact that your baby has a medical problem by not mentioning it to strangers, you still have the joy of your baby coming and that's the best of all!

More to you!

Deb

[the2amigos]

I'm so sorry you are going through this! I can kinda relate as this babe I'm growing now will need abdominal surgery in the 24 hours or so after birth and we are looking at a NICU stay also. It is so scary! One of the worst parts for me is the unknown. I know that we will have to stay at least 3 weeks, have surgery, etc, etc, etc. But is that the only problem? Will it be better or worse than they can see on u/s? What to do with DS? When will this happen (preemie too?)? All those unknown questions are so hard to have running through your mind constantly!

I'll be thinking of you! We will get through this!

[kcparker]

How scary and stressful and disappointing this sounds for you. I imagine it would be really hard, having to rethink all your plans for the birth and newborn period, worrying about this baby's health, and feeling unsure about how much to tell others.

Would it help you to start planning out your hospital birth now, figuring out the answers to these questions, working with the perinatologist and neonatal team who will be caring for you and your guy to make sure that as much of your pregnancy and birthing philosophy as is medically practicable is adhered to? Knowing that you are changing plans because your son's health necessitates it, what can you do to make this birth still be as smooth, and wonderful and magical as possible? The idea of birthing where he's going to get his neonatal care is a good one. And even asking for simple things like, if he has to be taken to the warmer for assessment, can we park the warmer right next to the bed so I can still see what's going on and talk to him? Like a PP said, plan on pumping/BFing, plan on doing kangaroo care, see if a family member or close friend can just be on stand-by for the two little ones.

Re: telling other people -- I would let people who genuinely care about you know as they will want to be supportive and will naturally be concerned for you and your baby's health. If you know you will be out of work for an extended period or will be using lots of FMLA leave for doctor appts. or surgeries that first year, it might be appropriate to send around an email or let your supervisor know (and say it's okay to inform other people on a need-to-know basis, whatever you feel comfortable with) so that nobody is wondering where the heck you are. People in the store, I wouldn't bother telling. Not out of shame or wanting to hide anything, but because it's too complicated to get into while you are just trying to buy some eggs and milk. If they are giving you good vibes about "yay, a baby!" just take that energy and well wishing and send it to your little guy.

[Prensa]

thanks for your replies, it means a lot ot me! I still don't know boy or girl, but found it's easier to just call the baby "he" for now...we'll see!

the2amigos, thanks for sharing your story, I read a few of your posts and you have some excellent questions for me to ponder too. As much as it sucks, it's nice to know there are moms out there going through the same thing, I'll be thinking good thoughts for you and I hope you keep that babe in for as long as possible! hugs, mama!

you mentioned the group "fetal concerns" at your hospital...I think I'm gonna see if they have someone like that here, I really feel like I wanna talk to somebody...

[sugarpop]

First I want to say congratulations. You feel like noone is saying it and they are afraid to congratulate "bad news". Your baby is good news, it is exciting and joyous and should be celebrated:!

The heart defect is sad and for that you need and support and for that part of your story I am very sorry you are going through this. Will visualization help at all? I have just started hypno-babies and I wonder if that relaxation and letting go of fears would be of use to you.

I am so sorry you feel all alone, there are many mom's here going through things as well that should be able to relate and offer support and understanding, even those of us that can't relate can still offer support.

Recently over in Birth & Beyond forum there was a thread about hospital births...and positive experiences. Maybe that would lift you up a bit. The birth of your baby will be beautiful, I understand it not being what you wanted, but still beautiful. It is easy for me to say this and I understand that. I will be thinking about you and LO and hoping for the best.

[mama kk]

for you, and :for your sweet baby's health.

[bekkie]

no advice from this first time mommy here... but I wanted to send you a big e-hug and wish you all the best in the rest of your pregnancy and send positive thoughts to you and your precious little one for a safe delivery, even though it's not the location you had hoped for!

to the2amigos as well and any mommy that has or is goung through anything like that with their babies

[KoalaMommy]

Just to give you some hope.

I know a family who just had a baby who had a major cardiac defect in utero. They were preparing to go to New York or Boston immediately after the birth to have the issue repaired, it was so rare and so bad they needed the best specialists.

But the baby was born fine. Seriously, whatever the issue was cleared up before delivery.

Try to stay positive. To the stranger, I would simply acknowledge that you are expecting. To acquaintances, I would tell them what you feel like telling. You could ask for prayers or support if you want to, or not. People will find out in time. But the reality is, you are still expecting. You're expecting a baby. Yes, your baby may have a medical challenge, but until you know something different, you are going to have a baby.

Another piece of hope, I know a baby who was in the NICU at birth for a week and mom was only allowed to see her 30 minutes each day, and not allowed to nurse. at 6 weeks, baby was weaned entirely off supplemental feedings and is now 100% breastfed. And I know more than 1 baby who was bottle fed breastmilk for more than a year. You can make it through this, and so can your baby.

[the2amigos]

and another I'm not sure what I would tell casual acquaintences - probably nothing right now. Co-workers, others that you feel somewhat close to I would tell them what is going on. They are going to find out eventually. I've been pondering this all day. I don't get out of the house at all these days so I haven't had that to deal with. However you answer and whatever you feel is right *IS* right.

When is your next appointment? I have many issues with pregnancy and doctor with a perinatologist with any pregnancy. He is affiliated with Froedtert (a big medical college, high trauma type hospital) and Children's Hospital of WI. They do have a group called Fetal Concerns. They assigned us a RN case manager, she comes to all our appointments with us and set up the appointment with had with the pediatric surgeon. For the next appointment she scheduled us to meet with a neonatologist to talk about life in the NICU and to also meet with a lactation consultant re:feeding issues. She arranges all these appointments AND has these physicians/others meet us at the perinatologists office (so we don't have to wander around finding their offices). It's been wonderful so far, well, as wonderful as this situation is. What hospital will you be dealing with for your/baby care?

You will get through this. In a few months this will all be a memory. (That's what I keep trying to tell myself at least!!!!)

[Prensa]

thanks again everyone, it's nice to get e-hugged

FWIW I get that I shouldn't be telling just any old stranger in the street, but on the inside my brain is screaming "my baby is BROKEN, this is gonna SUCK!" while on the outside I'm all "smile and nod, due date, kids are a handful, blah blah blah..." its just frustrating, probably more so becuase I don't have anyone I CAN talk to. Which is why I finally decided to post here

my next appointment is on the 7th, and I am looking forward to it, just for more info sake, and just after reading the replies in this thread I do think it's important that I become more involved with the hospital, find out more about it and step away from my denial and resistance to all things re: institutional medicine. I gotta buck up and face it because it is happening and the more I know the better prepared I will be, right?

I'm way up here in new england, so we might end up in Boston, but I'm still hoping that they can treat us locally, I guess it all depends on how the baby handles being out of the womb, and no one can really predict that...

kcparker, I noticed you are a doula, do you think that a doula would make a big difference? I am looking into that....

the2amigos, I am sorry that you are having a rough pregnancy on top of everything, but it's so nice to hear from you and see that we're not alone! I will be following your story here, if that's ok!

[guestmama9916]

I don't have experience with the heart defect but my DD was preemie and in the NICU. Not knowing when she was coming home was the most frustrating part. It was two steps forward, one step back but then one day we came in and she was off the monitors and in a regular bassinet. We knew then she would be coming home with us the next day! It was the most wonderful feeling! At the time it seemed like she was in NICU forever but now a year later it seems sooo long ago and I realize it was really just a short period of time. You might want to look into getting some domperidone for your milk supply ahead of time. My milk came in ok with only pumping but it was not as abundant as with my first child who was with me the entire time after his birth. DD quickly surpassed what I could give her even with her nursing regularly after coming home. I didn't find out about domperidone until she was 8 months old unfortunately. Take care mama!!!

[Bethla]

My third baby was born with a severe heart defect. We did not know until after he was born...in some ways this saved me a lot of stress...but on the other hand it was tremendously devastating and scary. He is now 6 years old and doing so well. His first surgery was at 5 days old and the next at 5 months old. He will need more in the future which I almost can't talk about because I'm so traumatized.

When people found out about his diagnosis and our situation I felt like I was shunned, You know that little saying, "I don't care what I have as long as it's healthy." This irks me...what if your baby isn't "healthy". Of course we all want healthy babies!

I wish you the best. It's a difficult road, but when you get through something like this you know you can get through anything!

[lovebug]

::: CONGRATS on the bundle of joy you have inside you :::

s mama i know this has to be hard!

[moonglowmama]

Congratulations! You are your baby's mama- just right for him/her!

I had a baby girl with a fatal neural tube defect, and we didn't find out until 31 weeks, just 2 weeks before she was born. Although your situation is not the same as ours was, I think my advice to you would be the same: enjoy your pregnancy, enjoy your baby, put yourself in a state of bliss like you were before.

Make the plans you need to, and get the answers you need, but remember that you don't know the future. Give your baby all he/she needs to be as healthy as possible, and just love him/her.

I wish you all the best!

[rsummer]

Congrats on your pregnancy. Yes, its scary, but you are about to add another bundle of fun to the mix.

We recently had a baby with a heart defect, tetralogy of fallot with pulmonary artresia. We found out at 39weeks, 5days that there was an anomoly. The one the perinatologist actually suggested was ebstein's. That late in the pregnancy, its too late for a fetal echo. I ended up with a C because they didn't know what was going on with my son. There are benefits to knowing, like you can get all those questions you have answered. Like is there a pediatric cardiothoracic surgeon on staff at the hospital you plan to deliver at. You can also tour the NICU. And pumping in dark rooms tucked away from the NICU sucks, but its worth it when you realize you didn't give up the opportunity to nurse your child. Also, so I don't scare you, I lost my son, but it had nothing to do with his cardiac defect, he had a rare chromosomal deletion and likely had a seizure.

Honestly, the first thing that popped into my head was, "Are you having an amnio?" The worst, absolute worst part of everything that happened at the hospital (besides the loss) was listening to the geneticists speculate what was wrong with my 36 hour newborn. Knowing ahead of time exactly what we were dealing with would have saved one of the most painful conversations I've had in my entire life.

We moved to a large midwest city from Vermont and we were really grateful we weren't camped in Boston. Hopefully you have family or friends there... The hospital we were at had room for 1 person to sleep in the NICU room. I also got fed for free for being a breastfeeding mom. Overall, being in the NICU was easy, but my son was my first, so no balancing act. Going home was easy, lots of dr appointments, but we did baby stuff, breastfeed, swaddle, swing... you know, the basics. It is super scary, but there is no reason that you can't imagine a challenging time, followed by years and years of family fun, love and hugs.

[Prensa]

thanks you guys!

the first doctor was really pushing for an amnio, wanted to do it right then and there (I had both kids with me, there was no way to make it happen) and then the other doctor (both just OB's, nothing fancy) said there was probably no benefit to having an amnio, we could just wait and do testing after...

now I'm starting to wonder why I don't have a perinatologist, a genetic counselor, a case manager...hmm...maybe I need to be more of a squeaky wheel?

Bethla, that comment irks me too, that was my DH's mantra "we'll tell them about the baby after the u/s to make sure it's healthy" and I'm thinking "what if it isn't? we'll still have to tell them??"

thanks you so much for sharing your stories you guys, it helps so much! rsummer, I'm so sorry you lost your son thanks for sharing

[kcparker]

Regarding getting a doula - I think having one could be really useful for you and your family, especially if you are lucky enough to find one who has been through a similar experience. If you are going to be in Boston and don't know anyone, a doula might make you feel a little less alone in a strange place. She can also help you with preparing and making the mental switch from homebirth to hospital and can help you create as much of a 'birthing bubble' as possible. She can give you extra support and nurturing during the birth, handle the practical stuff - gofer duties and physical comfort measures - and really free your husband up to be with you on an emotional and spiritual level. It's also really nice to have somebody who is not hospital staff with you immediately after the birth if your husband goes to the NICU with the baby and your folks are with your older kids. I think situations like this are when my clients have REALLY appreciated having me there - when they have just gone through this amazing birth, but their baby isn't with them, and they are having afterbirth pains or getting a tear repaired.

The other thing I'd look for in a doula is somebody who has experience helping moms who might not be able to nurse their babes immediately but want to establish their supply and breastfeed eventually. One can hope that the hospital has an amazing lacation consultant on staff, but if there isn't one, a doula can be a really good source of information and practical advice for breastfeeding. If you interview them, maybe ask about their experience with BFing if baby is in the NICU, if they have lactation consultant credentials, or if they have been LLL leaders.

Prensa, again. I am not a huge fan of institutional medicine, but in your case, I hope that it will prove to be a boon and that it ultimately helps your baby get off to the best and healthiest start possible. Do be a squeaky wheel - get your mama bear suit out of the closet and utilize all the resources at your disposal to plan and prepare for this new baby. I think by being as informed as possible about your baby's condition and treatment options, letting your healthcare team know your parenting philosophy and wishes, and working with them to make sure that your baby's needs are met on medical and emotional/psychological/spiritual levels, you will be able to give your baby the benefits of both Western medicine and your love and nurturance.

[bublegirl1]

So sorry about the diagnosis. My DS1 was born 8 weeks early with a malformed aortic valve with stenosis of the valve. Was in the NICU for almost 6 weeks then came home on a heart monitor. He went into heart failure at 8 weeks old, he was barely 8 pounds. He had a valvuloplasty done and has been stable since. Gets check ups every 6 months. Doc thinks eventually he will need a valve replacement or repair but I keep praying he won't.

Just wanted to share to let you know that I know how scary it can be, the thought of such a tiny baby going through so much but they are resilient! God bless and I hope everything is just fine. You'll get through this!