Congenital Heart Defect (Disability Question, USA)

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Congenital Heart Defect (Disability Question, USA)

Postby AnchorsAway » Wed Apr 14, 2010 8:35 am

We just found out at my 20wk scan that LO has multiple heart defects. We are remaining positive and all the research I've done shows that the heart defect is usually corrected within the first year of life without complications.

I work full time and my DS1 is in daycare. I am trying desperately to get into a situation where I can stay home while still allowing my sons a quality of life (healthy food, museam trips, vacations etc... we can live without cable and blackberry's we think)

Anyway, we're having trouble selling our house due to the market and dh and I both make similar salaries. We are going to need to cut more than $100, 000 off our mortgage. Even if I quit work, we will not qualify for WIC or any other services.

Okay, I'll get to the point... I know my son will need alot of special care after birth as well as a heart monitor. Obviously, I will need to be providing the care (NOT sending my son to daycare on a heart monitor)... Does Disability cover this sort of thing? I have no clue! Does anyone have any experience with this?

x-post in High Risk
~Me: 31
~Dh: 34
~DS: 16 Months~

~04/12/2010: At our 20wk Scan it was discovered that our baby boy has a heart defect (Overriding Aorta, Tetrology of Fallout). We are praying for Mason's health and are remaining positive throughout this journey~
http://preciousmason.blogspot.com/
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Postby cms222 » Wed Apr 14, 2010 10:00 am

First let me say that I'm sorry to hear about your lo's heart issues - hugs & prayers to you guys.

As for your question - check into MA as a secondary coverage due to disability/medical issues. I'm pretty sure that's how it works. And in PA as far as WIC goes, baby would automatically qualify with MA, regardless of family income. I'm not sure if individual states vary on these things or not. Good luck with everything!
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Postby rachelrhin0 » Wed Apr 14, 2010 6:33 pm

I posted on this in high risk but to the PP's comment...That is true. When my daughter got put on medicaid she was automatically accepted for WIC.
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Postby AnchorsAway » Thu Apr 15, 2010 6:04 am

Thanks, It's good to know about the medicaid and wic... I will try to find a website on those, soon.

I called my Insurance company yesterday and asked if my Long Term Disability would cover caring for a child past my 12wk maternity leave... The answer was a big NO. What does a working mom do who can't go back to work because of a child's disability???? Trust me, I'd LOVE to not go back to work, but it would be horrible to do at the expense of our home going into foreclosure and our credit getting ruined... Surely there's another answer!!!
~Me: 31
~Dh: 34
~DS: 16 Months~

~04/12/2010: At our 20wk Scan it was discovered that our baby boy has a heart defect (Overriding Aorta, Tetrology of Fallout). We are praying for Mason's health and are remaining positive throughout this journey~
http://preciousmason.blogspot.com/
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Postby starlette11 » Thu Apr 15, 2010 12:53 pm

I cannot believe you are going though all of this.. i am so sorry..
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Postby kated » Sat May 15, 2010 11:05 am

I am so sorry that you are going thru this. Do you know the name of the defect? Some, once they are fixed, require a lot less medical intervention than you would think. My son had a defect, underwent emergeny OH surgery at 4 days, had a LONG post op recovery, including a pacemaker inplant and finally went home 83 days later. Today, he is a normal, 3 year old boy in every sense of the word! He sees his cardiologist 1 time a year and the EP doc 1 time a year. He originally came home on oxygen and a Sat monitor, but that was only for a few weeks. So, in the end, your baby could end up with a lot less monitoring/supplies than you thought.

As for monetary help -- your child will quialify for SS for at least as long as they are in the hospital.

I wish you the best!!!!
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Postby mrsjoh » Sun Jun 06, 2010 3:19 pm

sorry to hear about your dx. I wish you the best. There are many possible outcomes with heart defects. Some require medical lequipment at home others not, really you won't know until your little one is out and you see how well they are doing. With heart defects, there is no way of knowing how well a child will do. I wouldn't even say to judge it based on another childs heart defect. I like to think of these special hearts like snowflakes, every one is so different. Even with the same defect.

There are quite a few groups out there, I suggest getting involved with one in your area and getting connected with a family (they have parent matching groups), they can offer the best advice as to what is available to you locally.
http://mendedhearts.org
http://www.littlehearts.org/
http://www.childrensheartfoundation.org/
area few.

We live in MA, in our state ( we have bcbs) if a child has a severe medical issue they fall under a special group and get a secondary insurance from the state of massachusetts. So blue cross covered all the big hospital bills, but the secondary covered all co-pays, rx costs, ( you can imagine how these would add up) additional medial supplies we needed at home etc. Also we qualified for the state to pick up our premiums, as I wasnt working and staying home, the way the state saw it, they didnt want us to lose our primary insurance, blue cross, as they pay the big hospital bills, so paying the premium every month insured our son would have insurance,

please feel free to email through our website
jaspersheart.com if you have any questions,
wishing you the best
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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Postby mrsjoh » Sun Jun 06, 2010 3:23 pm

also regarding SSI, yes your child will qualify if they are in for a full calander month, so if they are born on the 5th of jan and leave 5th of feb it doesnt count unless they are in until the last day in feb, it has to be from the 1st day of a month to the last day of the month. While in the hospital you can expect about $30 a month from ssi, when you are home it is about $700 amonth, if you qualify BE CAREFUL AND Keeep all documents, they say you will qualify if you make less then $700 per person per month (family of 3 $2100) but lets say you get qualified for being in the hospital for a month, then get home and they start sending you the bigger checks, they can decide you are not eligible and ask for monies back, after a few months it happened to us and they asked us for $1800 back!!! the social worker at our hospital said it happenes a lot and she doesn't suggest families to apply and to be careful if they do.

also the social worker at your hospital might have knowlege of programs in your state you can apply for! ask them!! thats what they are there for :)
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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Postby jmlgirl » Mon Jun 07, 2010 10:12 am

so sorry to hear you are going through this... I want to ask/suggest regarding the mortgage... if own one home and you have a 30 year mortgage you may qualify for a Loan Modification... call your mortgage company and review some things online... you don't need to be delinquent on payments to qualify... birth & leaving your job to care for your children will be considered a "hardship"... this may allow you to keep your house and be able to live on one salary...
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Postby AnchorsAway » Mon Jun 07, 2010 11:31 am

Thank You all for the info/suggestions!

Nearly 8wks has passed since the initial diagnosis and we are scheduled for another appt with the Pediatric Cardiologist this Friday. I will know so much more about the extent of the defect after this appt.

MrsJoh: Really wonderful info! I would think if you were sent a check, it should be yours! Very scary and something I will keep in the back of my mind! After Friday's appt, I'll start researching what options are available to us!

Kated: So far, they think it's Tetralogy of Fallot. However, at the last ultrasound, we were told that it could be simpler, but Mason was too small for them to tell. Hence, why we have this appt coming up on Friday. Thank you for your positive story!

jmlgirl: *sigh* My mortgage was sold to this no-name company where they call me from foreign numbers and you can't get anyone on the phone.. EVER. I applied for Making Home Affordable and it was a sham. I thank God we didn't qualify for it. I had no idea you have to ruin your credit in order participate.

I then asked about a Loan Modification and was again told, we weren't delinquent and made plenty of money to cover our mortgage ( I guess food, daycare, and bills are not necessary in the mortgage company's eyes)

After learning of the heart defect, I wrote the Company a long letter (I have to write letters because you cannot speak to anyone on the phone. The one time I got someone, their English was so broken I couldn't understand them and they were just reading from a script to me. Anyway, I advised them that I will be without income during the months of September and October and inquired if I could be forgiven those months and have two extra payments tacked onto the end of my loan.

About a month later, I got a curt letter stating that they would not allow any sort thing and that I'm bound by the terms of my original loan :mad:

I'm just trying to avoid being late and/or any type of ding on our credit!!!

Thank you all for all the wonderful information!!!
~Me: 31
~Dh: 34
~DS: 16 Months~

~04/12/2010: At our 20wk Scan it was discovered that our baby boy has a heart defect (Overriding Aorta, Tetrology of Fallout). We are praying for Mason's health and are remaining positive throughout this journey~
http://preciousmason.blogspot.com/
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Postby mrsjoh » Mon Jun 07, 2010 1:32 pm

kup :) I wish you a great visit friday!!!
we had quite a few dx with jasper before he was born, the way he was lying made it sooo difficult for his cardiologist to see what was going on, and they really didn't know until after birth, even those echos weren't great, so the surgeon said- i'm going in! - our son had a very odd shaped heart though and MANY complications, so don't be to afraid by our story, just wanted to let you know it is pretty common to not know the dx until they are out of the womb

The snowboarder Shawn White has a TOF repair :)
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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Postby AnchorsAway » Sun Jun 13, 2010 1:35 pm

mrsjoh: Well, he was definately diagnosed with ToF but it appears to be a mild version according to the cardi. He said he sees nothing on the scan that leads him to believe we need to deliver at a specialty hospital, but the option is up to dh and I. We know nothing is 100% and they won't know everything for sure until Mason gets here, so it's a tough decision. I can't imagine my baby getting airlifted to a hospital 3hrs away without me...

They said Mason will definately need a repair sometime between 4-6 months of age. Nothing on the echo alerts teh Cardi to him needing any sort of immediate intervention at birth, but I guess you can never tell.
~Me: 31
~Dh: 34
~DS: 16 Months~

~04/12/2010: At our 20wk Scan it was discovered that our baby boy has a heart defect (Overriding Aorta, Tetrology of Fallout). We are praying for Mason's health and are remaining positive throughout this journey~
http://preciousmason.blogspot.com/
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Postby irishsweetie2003 » Sun Jun 13, 2010 2:18 pm

I would try March of Dimes and Blake FOundation... These two organizations are well known for providing extra services like therapy. As for the childcare. No one covers special child care....
You said you are only 20 weeks right now? Good news is you still have 20 weeks to bake that bun and I know a lot of things can change in that amount of time. My son had the same problem at birth which was at 28 1/2 weeks gestation. They swore weekly that he would need surgery. He never needed surgery and he came off the oxygen two weeks after comming home. Not bad for supposably having a forever disorder. He also suffered from phnemothorax (lungs blew out and collapsed). They're a whole lot rougher then we give them credit for.
If you still need to make money.... I would check into possibly doing Child Care out of your own home. There is a major need for childcare every where. You would make a perfect canidate sense you have experience with "normal kids" and "special needs" kids.
That's what I did when my son was born with a level three cerebral hemorage and fluid on the brain. I stayed home, did child care and worked with him. Same with my youngest son who had the heart defect and lung problems....
Hope these ideas help.
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Postby mrsjoh » Mon Jun 14, 2010 1:13 pm

wow sounds good!!! these decisions are so big, and difficult to make, you will do what is best :) one of our cardio drs said, make a decision that you won't regret in 5 years, that helped us a lot when thinking things over,
you will be in my thoughts and prayers :-)
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Postby mrsjoh » Tue Jun 15, 2010 10:34 am

thought of another one
http://tchin.org/spencersfund/
The Spencer Kult Memorial Family Assistance Fund (Spencer's Fund) is available to families and individuals affected by Congenital Heart Defects.

Who is eligible to make a request?
Spencer's Fund will honor requests directly from families in need, and from Cardiac Social workers at Pediatric Cardiology and Adult Congenital Heart centers throughout the United States.
********************************
also, in MA they offer respite care- which means that you can have some designated child care providers, a mom, sister , neighbor etc, and they will be payed, so that you can go off and do something etc, not every state has it, and there are stipulations, but maybe it might be something you might have, the social worker at your hospital will (should) know more about what is in your state
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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