Coping with the news that my baby has a Congenital Heart Defect-HLHS

[J.J.]

  I am writing this post more to organize my thoughts& it will be informative to those who know nothing about Hypoplastic left heart syndrome.  This is a continuation of a post (and in much more depth) of one I did many months ago (Sept or Oct. when I first learned of his condition..)

   In a month I expect to be a new father.  My life hasnt turned out like I had hoped and dreamed it would.  At the time I am writing this I am 25 years old.  I have not yet graduated college, I am close (15-30 hours away)  but that has been put on hold to ensure that my unborn son is provided for. I will go back and finish even if its just 1 class at a time.  I am still working at Wal-Mart, not necessarily a bad thing, I just dont know if I am going to be an Assistant Manger or not.  I have been waiting a month to hear if I will be promoted.  My wife starts her maternity leave today, and money is going to be the a major worry soon& I dont care if I loose my house, cars, computers, guns and etc.  As long as I have a roof of some sort over my families head, and the ability to pay the medical expenses for the Baby.  Insurance can only go so far when you are talking about The Most expensive Birth Defect (See * 1 post 2)

The most expensive condition was hypoplastic left heart, in which an infant is almost or completely missing the two left chambers of the heart. Treatment is a heart transplant or a series of reconstructive surgeries, and the condition required a 29-day stay in the hospital that cost about $200,, on average.

This total is just the hospital stay not the operations or specialists or anything.  Just what the hospital bills.  The support group that I am a member of found this very amusing because the numbers are actually very Very VERY conservative.

  Another worry is the doctor told me that about 85% of couples of children with such severe heart defects end up getting divorced.   My wife and I are already fighting more than we have ever in our lives.  It is very stressful and tempers get worn down from days of worrying.  Keeping the family whole will be an ongoing problem.

  The most worrisome part is that we know our first born child is going to have a very rough early childhood.   
My son has been diagnosed with Hypoplastic left heart syndrome (HLHS).  HLHS occurs in about 1% of all Congenital Heart Defects.  In other words HLHS happens in 2 out of every 10,000 births.  The rates may be higher because often HLHS isnt caught until after the baby is born.  And if a child has HLHS and it is not treated the mortality rate is 100%.

What is Hypoplastic Left Heart Syndrome?

  In Hypoplastic Left Heart syndrome the childs left ventricle is hypoplastic , Hypoplastic just means not functions or under developed.   The Aorta is usally reduced in diameter.  The Mitral valve is Atretic (meaning stuck closed)
Here is a good picture of the differences of a HLHS heart and a normal heart.



What do they do for HLHS Step 1 of 3

  My son (Kenneth) will go thru a series of at least 3 heart surgeries.  The first one will happen when he is just 5 days old.  The good news is the survival rates are In the 80th percentile for the first surgery.  20 years ago the mortality rates were in the 80th or 90th percentile. 

  When Kenneth is born he will be almost immediately taken to the NICU (Neonatal Intensive Care Unit)  Once in the NICU He will be hooked up to many machines, once he is judged ready (recovered from being born)  he will be sent off to the first surgery.

  During the first surgery they reduce the babies temperature to 60 degrees, by literally packing ice all around his head.  Once the core temp is down that low organs start to shut themselves down (for lack of remembering the technical terms)  The Baby is also hooked up to a Cardiopulmonary Bypass Machine and his heart is stopped.  The Bypass machine artificially keeps the blood oxygenated and flowing while the body temp is continued to be lowered.  Just before the surgeon starts the operation the bypass machine is shut off.  The surgeon has a limited time frame to perform the operation.  The most likely surgery to be performed is called a modified Norwood or Sano Shunt.

Cont.....

[J.J.]

Part 2.
 (sorry I had to take a break for that part.. actually typing out what happens to the baby how he is essentially put in such a state of hypothermia that he will be not dead but/not living is hard to deal with.)

  First the surgeon cuts open the Aorta and filets it (The surgeons own words) so that it is larger and can handle the proper amount of blood flow.  Then a Gore-Tex tube(Yes, Gore-Tex the same stuff in shoes) is attached to the center of the left and right portions of the pulmonary artery. The other end of the tube is placed in the right ventricle, which allows blood to be pumped directly to the lungs. This tube, in effect, takes the place of the main pulmonary artery.


After the operations are complete the Surgeon puts a Drainage tube into his chest.  And everything isis started back up.  Most likely the chest will be left open for a few days until the drainage tube gets all of the excess fluids out.   During this time Kenneth will be in the Pediatric Intensive Care Unit (PICU).  This is where the majority of the 20% mortalities happen.   

Once everything is drained and all of the stitches no longer leak, his chest will be closed and he will be taken back to the NICU to recover.  From then on its up to the baby, some stay in the NICU for 5 days others stay in for 20. It is all a waiting game.

On Average 20 days later 

While he is in the PICU we (My wife and I) will get to learn how to properly care for him. 

How to give medicines
How to use a Pulse Oximeter  A machine that is used to check is oxygen saturation levels.
How to insert and remove feeding tubes
How to perform CPR and other livesaving tips/tricks.

  When Kenneth is ready to be released from the Hospital we are going to stay the night with him and take care of him by ourselves (but with a nurse within call) for the first time.  Once we are comfortable and have proven that we are able to handle this&.
 Baby Kenneth will get to come home for the first time!

What do they do for HLHS Step 2 of 3

The second surgery happens at 4-6 months of age and I do not have ALL of the specifics of that one it was too much for me to remember.

What do they do for HLHS Step 3 of 3

The third surgery happens around age 3 and refer to above for why I am not mentioning it.

What happens afterwords&How long of a life expectancy

We dont know.  No one knows.  The oldest person to have survived all 3 surguries is in his early 20s.  The best educated guess is his heart will wear out in his 30s. 

In 20+ years that these surgeries have been performed the rates have gone from 95% mortality to over 80% (probably closer to 90% by now) survival rates.  So in 30 years maybe they will have improved the Heart Transplants just as much&  I hope that in 30 years if he needs a new heart better options are available to him.

My child will never be able to play football or basketball or any contact sports.  He will find it impossible to run a mile. Even though the surgeries work he will not have the stamina to keep up with everyone else during the long haul.  It will be a delicate balancing act to teach him to know his limits but NOT to abuse them. (I cant do that I have a heart condition when he can do actually do something.)  Tennis seems to be a viable alternative as a sport for children with HLHS. 
What about mental problems and etc.   The rates are not exact.  Most cases of HLHS are not caught until after birth.  By the time they are caught, the child has had low oxygen levels going to the brain, this maybe the cause for most of the mental problems children with HLHS suffer.  ADHD seems to be very common in children born with HLHS (thats easy enough to deal with.)
After 2 months of researching, I still dont know enough.  No one knows exactly what causes HLHS, No one knows what will happen 30 years from now&     

I just know that I am going to fight to provide my child with the love and care he deserves. 
I had years growing up where a pair of socks was my Christmas gift.  I am not ashamed to admit it, and I pray that my son doesnt have to ask me why he cant have a new toy instead of Socks, but if he does ever have to ask me that question, I will not know how to express in any other way then thinking because he is around to ask such a question.  I am going to go now.. So I can call my Father and tell him I love him.  Thinks like this last paragraph made me realize how much of an aI was as a child, asking and demanding for material items, when someone struggles and works long hours to ensure that you have something no matter how small& (but thats a different topic all together.) Before I go I finish I want to put a few things down in stone

I will struggle to control my short temper due to stress, 
I WILL provide my wife with the love and support she desrives. 
I am willing to loose everything and to never finish my dreams (such as finishing school, owning more toys etc.)  to make sure that my child has the opportunity to survive. 

-Jacob Johnson
   Expectant father in less than 1 month.

*1  -   link for new story on costs http://www.foxnews.com/story/0,2933,244960,00.html?sPage=fnc.health/pregnancy

[Perd Hapley]

Sorry to hear about that.  I'm with you on the half-way through college thing. 

[J.J.]

You read my novel in that short of a period of time?   I wasn't even done proofing it.   I Know the grammar is almost non-existent but I worry about spelling and context... things I can fix without my brain shooting sparks and emitting the faint smell of smoke. (Me and Grammar do not work well together..)

[Matthew Carberry]

You have my sympathies and prayers for a successful outcome each step of the way.  Sounds like you and your wife, even though stressed, have your heads in the right place.  Lean on that support network, don't let pride and sorrow lead to isolation.

It's good you are planning for childhood already, keep or eyes on the future, let the present take care of itself.

[Nightfall]

Times like this I wish I was rich so I could help out. He may not be able to play football, but at least he'll be able to shoot with dad. I certainly wish you, your wife, and son the best possible outcome in all of this. I'm sure everybody here on APS will agree with me when I say we're all here to provide what support we can.

[Declaration Day]

Wow, sir, I am really moved by your post.  There's nothing more honorable than a father willing to give EVERYTHING for his son's future.

I tell you what...you let us know when your son reaches his first birthday.  Don't worry about having money for a gift....I'll send you a gift for him.

[wmenorr67]

Keep us informed.  You will be in my prayers.  Good luck and don't ever be afraid to ask for help.

[Felonious Monk/Fignozzle]

Part 2. I will struggle to control my short temper due to stress, 
I WILL provide my wife with the love and support she desrives. 
I am willing to loose everything and to never finish my dreams (such as finishing school, owning more toys etc.)  to make sure that my child has the opportunity to survive. 

-Jacob Johnson
   Expectant father in less than 1 month.

Jacob,
First of all, congratulations on becoming a dad!  It changes your life, no matter what.

Second, some thoughts: When you look at the entire situation and process it under a microscope, to include impact to physical, mental, spiritual, emotional, social, marital, financial and professional considerations, it is indeed thoroughly overwhelming.

Slow down.  Enjoy feeling him kick in your wife's belly.  Laugh about it. 
The Creator of the universe knows of your wife's and your ability to love and care unselfishly for this little boy, which is the rare commodity in today's world.  That same Source can and will bring to bear the resources necessary to cover the $$$ as the time comes. 

You will discover who your true friends are, and who merely finds you a convenience to their social agenda.  To me, that's very valuable, not to have to play games and wonder who are the ones around you who are Good Men and True.  Hold those friends and family close, and know that they will be there for you to lean on as times get tough.

Read the Desiderata in order to gain some perspective.
Read whatever provides you with some perspective.

Gain strength in knowing that it's going to be alright.  Live -- REALLY live -- daily.  And realize that every one of us has only 'moments' to live.  Use them as the treasures they are.

Hope this doesn't come across as a bunch of PollyAnna BS.  I truly try to live this way myself.

Blessings-- namaste, I'm praying for you all.
Fig

[Perd Hapley]

You read my novel in that short of a period of time?   

Well, not the whole thing, no.  Enough to see some of what was going on.  Sounds like an extremely tough spot, so I thought I'd offer my condolences for the harsh prognosis. 

I'd suggest a J.J.'s Boy charity fund, but we've recently seen one of those forum fundraisers go really bad. 

[J.J.]

I appreciate everyones responses and feedback.  I just needed to get everything off my chest in one go. Daily I have to tell people bits and pieces of what is going on.  Telling the whole story helps me in ways that are hard to explain.

Feeling Nothing More than Feelings 

I have a habit of not confronting my problems and somehow distancing myself from the problems.  (In cases of emergency at work I am usually the calmest one.  Unfortunatly this means that I don't analyze or notice my feelings and usually don't realize what is bothering me.)  This post was a way of just solidifying things I have been ignoring.

Another Day Another Dollar 

For instance - At work I am in Limbo and have been in Limbo for 2 months now.  I have had no word on not only when but IF I am going to be placed as an Assistant Manager.  I was in a training program that was designed for college students.  In this program I completed my training at my own pace and when I graduated college I would be placed as an Assistant Manger.  Needless to say 6 months into the program I had completed my books  and It was smooth sailing and I was happy to bide my time until I graduated.  Now that I am not going to graduate I am not sure if I can be placed as a Manager.  This is a very Gray area.  What can they do and not show favoritism and etc.  I spent all of December and January shadowing an Assistant Manger learning from him and learning on the job.  In the middle of January I covered for him while he went on vacation for 2 weeks.  3-4 emergencies (The area is Meat/Deli/Seafood) like the plumbing stopped working, and associate cutting her finger on a slicer and 2 days of the worst Ice storm I have seen since I have lived in Central Texas. (Shut the areas down almost completely for 2 days. )  Not a single complaint about me during that time.
I am more than qualified to be a manager, most associates view me as a manager.  Making $10.40 an hour will NOT pay all of the bills.  As an Assistant Manger I would start out making $39,500 a year.  This may seem like a Large amount to most people, but when dealing with the medical costs we will it will not go as far as normal.   A LOT Farther than 10.40 an hour though. 

Heart babies have a hard time gaining weight and can need more than breast milk, they may need a special formula to help gain weight.  Insurance doesnt always cover these things. 

Welcome to Middle Class 

If I am NOT an Assitant Manger I will take another job or two, I will do what it takes.  I should qualify for Government Help IF I am not promoted.   But If I am promoted I will make too much for government help.  Welcome to the Middle Class&  I dont make enough to cover my bills but make to much for the govt. to help.
HLHS babies are eligible for Social Security Disability (dependent on parents income) 
One Exciting thing is.. He will be eligible for a wish from Make-A-Wish Foundation after he is 3 years old.

We are on the Home stretch-

I know Im more of a lurker than an actual poster.  I try to remedy that but just forget and go back to lurking.
I just hope that what i have learned can one day help someone else in my situation.   
I am also feeling the waters out.  I will need a place to post my concerns during the first few weeks/month and I don't want to post something that takes up needless bandwidth.

[J.J.]

Fistful -
The Wife's work did a fund raiser - we raised $2,000
My parents keep funneling everything they can into the benefit account we have $1,000
The Wifes Grandfather is sending us a check for $1,000

This sounds like ALOT of money.  But insurance is an odd circumstance.  We have to double insure him for 3-6 months (paying cobra premiums on one insurance policy).  We have to do this because my wife is/was a school teacher.  She is contracted for x amount of days (from this date to that date) since she is having to start maternity leave today, her pay checks will cease before her contract is up.  We are going to have to pay for the insurance until the contract is up and then a couple of months afterwards to make sure that the insurance I will get from my job (I have to sign up for it once the baby is born) is paying all of the bills.

We figure we need around 5-6 thousand dollars to pay insurance premiums while he is double covered.  I am worried that my insurance will only pay $25,000 out that first year. (little fine print I have come across twice in reading up, they may be able to wave the $25,000&.  So we may have to cobra the wifes insurance for the full 13 months if the cap is not waived.  Those are just the premiums and not the Deductibles and etc.

I hate to hold my hand out.  And that was not the purpose of my posts.  So please don't think of me as a money grubbing.... *shrug* can't think of an witticisms sorry....

On that note....
(www.myspace.com/squintypete has a paypal button, I hope I don't get into trouble for saying that)

[AmbulanceDriver]

J.J.

First and foremost, you and your family are in my thoughts and prayers. 

While I can't say that I know what you are going through, I can certainly empathize with the pain and struggles of your son's heart problem, and the excitement and joy of your son's impending birth. 

Thank you for sharing with us your thoughts and feelings.  And I'm with Declaration Day.  I would love to send a little something (even though I may be eyeballs deep in med school debt by then) for your son on his first birthday, if you don't mind. 

And no, you don't come across as a "moneygrubbing" person at all.  You come across as an honest man, willing to do whatever you can to take care of your son and your family.  And if we are moved by your love for your son to do what we can to help, then we do so, and gladly.

[roo_ster]

Y'all are in my prayers.

[Phyphor]

  I am writing this post more to organize my thoughts& it will be informative to those who know nothing about Hypoplastic left heart syndrome.  This is a continuation of a post (and in much more depth) of one I did many months ago (Sept or Oct. when I first learned of his condition..)

Holy *expletive deleted*it, bro. 

Prayin' for ya, dunno how much it'll help....

[Waitone]

I've been down the medical // bills road a few times.  I'll offer a few observations.  They are worth precisely what you paid for them.
--Serious medical problems will either drive you and your wife together or it will explode your marriage.  Get professional marriage counseling and therapy now before.  You will be exposed to pressure mortals can only imagine.  You will deal with the stress in your way; your wife in her way and sooner or later there will be conflict.
--Being the male of the species you are hardwired to provide come hell or high water.  Failure to imagine how you can provide because of the circumstances will put pressures on you that your wife has no clue of.  You will react to the pressure you feel but she can not see.  She will see you wigging out for no reason in her view and all of the sudden you are the nutcase.  See my comments in one above.
--Bills are reality.  Reality is there is no way in hell you will be able to pay for them at your pay grade.  Reality is there is untold numbers of ways bills will be paid.  You have to get busy and smoke them out.  No, it is not welfare.  Our society has lots of ways making crushing medical bills go away.  Quick personal story.  My ex's second case of cancer was melanoma.  Three cancer specialists told us the same story:  the only treatment was Interferon.  A course of treatment was set under the assumption my medical policy through my employer would pay the tab.  About 6 weeks into treatment my company informed me they would NOT be paying the bill and that I would have to scratch up cash.  Treatments were $1500 / week (mid-1980's)  Bottom line I had to make phone calls but I eventually found an organization that paid the back costs and the future costs.  Get busy now talking to the doctors, the hospital, medical aide organizations, Red Cross, heart foundations, disease associations, etc.  The help is out there but you will have to go after it.  This too will cause you stress depending upon how you are wired.  See my comments in one and two above.
--Bad things happen, accept it and deal with it emotionally.  We live in a society that brands into the mind of its people that we are the masters of our own fate.  That is USDA Grade A Bulls*it.  We are not the masters of our fate.  We are a cork floating in the ocean.  Accept it.
--Let your child live its own life.  Don't be upset because your visions of your child's life failed the reality test.  Each child is a gift of God to its parents.  Each child will bring you joy in ways you just can not predict.  Don't preclude happiness because reality fails your expectations.
--Steel sharpens steel.  Your character and marriage (if it doesn't explode) will be tested and proven stronger by virtue of the trials you are about to experience.  Don't short change your child and don't short change your wife.  You will get on the other side of the problem.  You don't know how.

[Felonious Monk/Fignozzle]

JJ,
I'd just print Waitone's post, share it with SWMBO, tack it to the PC and re-read it daily.  Best advice anyone could give you.

Fig

[J.J.]

I appreciate everyones prayers, concern, and comments.

I have started to realize much of what Waitone is talking about.  We (The Wife and I) are already feeling the stress of this situation.

At the latest Dr. Appointment they started figuring out when to induce.  March 14th may be the day he is born as long as everyone of the Dr.'s who needs to be in the room is available.

Little Kenneth is growing well...  at 37 weeks he is 6lbs and 14oz. (I am still amazed that they can figure that out from the ultrasound) This is very good because Heart Babies are usually small.

Work is talking about promoting me soon (I get the feeling it will be Sat. I hope so because I have to take a leave of absence starting the 14th...)

My worries are a little less, but I still feel the same as I first posted....  I just wanted to thank everyone again... And I will post more when he is born if the interest is still around. 

[cosine]

I'll pray for you and your family.