Baby Diagnosed with HLHS (long)

ngagne · July 2009

This is hard to share but I feel like sharing...not ready to share with friends and extended family yet. In May we had a Nuchal Translucency Scan and our baby's neck measured large. After a CVS procedure his chromosomes looked normal. We were very hopeful that things were fine. Unfortunately we got the bad news that we had been praying against. We went on Thursday for the Fetal EKG. The doctors took a long look at his heart and then shared the bad news. Travis has what is called Hypoplastic Left Heart Syndrome with a common atrium. His Left Ventricle never fully developed properly and will not be able to function without intervention. Additionally, his atriums are not separate into two chambers....it is one by itself. This syndrome happens spontaneously in 1 out of ever 10,000 births. Years ago, it was a death sentence. Fortunately, there is now a well defined surgical approach to his condition...it is a series of three complex open heart surgeries spread out over the first year of his life. The first surgery would need to be immediately performed after birth. The surgeries (in essence) will jerry rig his two chamber heart to function as a regular four chamber heart. Since these procedures (called Norwood/Fontan) have only been around for 20 years or so they only know the possible life expectancy of 20 yrs. However, the 20 yr patient is still doing well. We will not know the severity of Travis' heart until later. They are planning to do a full study on August 18th and then we will need to meet with the surgeons at Children's Hospital in LA to discuss delivery (probably will be via a scheduled c-section) and what will happen afterwards. Travis will likely be in the NICU for the first few months of his life and he will need one on one care for the first year of his life. My husband and I have so much to figure out. Our heads and our hearts feel so heavy. As you can imagine we are beyond scared and full of grief. What is supposed to be the happiest time in our life is now so uncertain. It hurts that God has picked Travis to have to go through all this. We just keep thinking how unfair it all is. We could definitely use some prayers. Send them our way!

vmm0016 · July 2009

I will be praying for you and your family!

DiscusCoach · July 2009

God Bless early testing. I am so glad you have time to plan and make all of these decisions. It is so amazing what they can do.

I will keep you in our prayers. I hope you still check in with us.

chrystaleigh · July 2009

Praying for you and your family and wishing you my best.

Kat617 · July 2009

You and your family are definitely in my prayers!!

Traycee1242 · July 2009

Prayers for you and wishing you all the best! Hang in there!

Pookster1020 · July 2009

My niece has down syndrome & was born with a sImilar heart defect. She only had two chambers and needed surgery to create four chambers. That was 19 years ago and she's doing great. Hang in there! You will be in my prayers.

rnbride18 · July 2009

praying for you and your precious little one...take comfort in the miracles of modern medicine...I'm a pediatric nurse and it is amazing how resiliant children are..they are full of vitality!!

Califlorida · July 2009

i'm sorry you guys are dealing with this. it's an awful lot to consider for your future. i hope nothing but the best outcomes for your little boy.

brandonsfuturewife07 · July 2009

good luck to you & your little one. thank God for technological advances!

kauai04 · July 2009

You are in my prayers! I know a girl whose son was born with this almost a year ago. He has had several procedures and is doing well now. I know it is a long road, but there are positive outcomes out there!

Johnna&Ralph · July 2009

You are in my prayers.

pleasantsarg · July 2009

What a lot of information to digest. I am so sorry & will be praying for your family.

cla40749 · July 2009

I'm so sorry for what you're going through.

If it's any help, my FIL was born with a hole in his heart in 1955. He was the first baby to have open heart surgery. The docs told his parents he would be sickly all his life and die before he reached 15. He would never do anything athletic and may not be as bright as other kids.

Today he is alive and well. He broke his school track long-distance record twice. He is a certified genius on IQ tests. He has high BP, but no other problems.

Just goes to show Drs don't know everything. Though there will be difficult times, there is no reason your sons illness should ness. limit his dreams or potential. He can definitely beat the odds and defy every negative diagnosis. God will carry you and your son through.

erinb31 · July 2009

Your family is in my prayers. Stay strong.

diana.filipi · July 2009

Good luck feels so lacking. I want to say more. I'll keep you and yours in my heart and mind. Love be with you.

daisybaby09 · July 2009

My thoughts are with you and your family. ?I am sorry that you have to go through this. ?

woolgathered · July 2009

You are all in my prayers. I know god handed you this challenge because He knows you can handle it - as tough as it sounds. I'll be thinking of you - what a scary set of events, but thank God there's steps to help Travis.

klande3 · July 2009

I am keeping you in my thoughts and prayers. I am a special Ed teacher and thought maybe... just maybe... this might help ease your mind a little bit.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this?

When you're going to have a baby, it's like planning a fabulous vacation trip---to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pace your bags and off you go. Several hours later, the plane lands, and the stewardess remarks to you, "Welcome to Holland." "Holland??" you ask. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, and less flashy than Italy.But after you've been there for a while, and you catch your breath, you look around, and even begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever go completely away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Taken from Orange County MOP's
March 2001 Newsletter

Written by Emily Perl Kingsly
Heartline, December 1989

C12H22O11 · July 2009

Thoughts and prayers are with you. ((hugs))

lili_ana · July 2009

Be strong, your baby will need that from you. You will be in my thoughts and preayers.

holdn5 · July 2009

I just wanted to say good luck and you'll be in my t&p's.

A little side note to pass along. Dr. Norwood (which the prodedure your baby needs is named after) completed my heart surgery in 1980, I was 3 months old. My parents and I for that matter were very lucky that he was practicing at Boston Childrens at the time or else I probably wouldn't be here today. This man was a pioneer in cardiac surgery and defects. While I realize he isn't the one performing the surgery, I'm sure those that are will be well equipped and I wish you the best!!! Keep us posted

erin_aaronsbaby · July 2009

You and your family are in my thoughts and prayers.

Blondemommy · July 2009

I'm so sorry that you and your baby will have to go through this and you'll definitely be in my prayers! It's amazing what they can do with the heart and the advances they continue to make.

am&md110307 · July 2009

You and your son are in my thoughts and prayers. Good luck and keep us posted.

KimberlyJean · July 2009

I am sorry you are dealing with something so tough right now. My thoughts and prayers are with you.

llggx2 · July 2009

I found this post kinda late but hopefuly you are still checking in. I just wanted to let you know my prayers are with you. I also wanted to tell you that my family has been through a very simmilar situation. I cannot remember what my cousin was born with but she had an open heart surgery at 2 days old. She then had 2 more and several stints. She is a healthy 5 year old that has had no problems since the last heart surgery. It is scary and you have every right to feel the way you do. Just know you are never given more than you can deal with. It sounds like you are in a good hospital and I know the doc's will take great care of your little one. Please keep us posted and God Bless.

Mrs.Keith2B · July 2009

I'm so sorry to hear this. I know it's difficult, but try to look at the positive side of things -- technology and surgeries have some so far in the last 20 years. I bet God picked Travis to go through this because He knew that Travis will be strong and can overcome the challenges that will come his way...just like his parents will be equally as strong.

I'll keep you and Travis in my prayers. Stay strong

Nell1217 · July 2009

lots of prayers to you and your family!

tdaisy101 · July 2009

I will keep you in my prayers.

Vuja_de · July 2009

::HUG:: you and your family will be in my thoughts and prayers.

Kevinsdes · July 2009

i'll keep you in my thoughts and prayers. modern medicine has made so many advances that your baby will be okay.

libbyacross · July 2009

Sending good thoughts your way.

Tinkx123x · July 2009

I will keep you in my prayers as well. I am so sorry you are going through this.

PurplePeep · July 2009

I am so sorry for this difficult and scary time y'all are having to go through. Thank goodness for early testing and for the doctors being able to plan how to help Travis. I'll pray for you, *hugs*

MSC03 · July 2009

((HUGS))

SDKelli · July 2009

I am so sorry to hear that. I pray for you and your SO for the strenth and courage to make it through this difficult time and through the surgeries. I also pray for your Little One to be strong and pull through all of this. It is amazing what doctors can do these days, so I have no doubt they will be able to help little Travis.

P.S. I'm just "down the road" from you in Escondido...My DH and I got married in Temecula.

sjp · July 2009

i am so sorry you are going through this--will keep you in my thoughts

lovebug630 · July 2009

I'm so sorry you're going through this. I will definitely be praying for you. Please keep us posted.

ngagne · July 2009

llggx2:
I found this post kinda late but hopefuly you are still checking in. I just wanted to let you know my prayers are with you. I also wanted to tell you that my family has been through a very simmilar situation. I cannot remember what my cousin was born with but she had an open heart surgery at 2 days old. She then had 2 more and several stints. She is a healthy 5 year old that has had no problems since the last heart surgery. It is scary and you have every right to feel the way you do. Just know you are never given more than you can deal with. It sounds like you are in a good hospital and I know the doc's will take great care of your little one. Please keep us posted and God Bless.

Sounds like something similar to what baby T will need. Thank you all for the kind messages!! And the prayers!!