Tuesday, September 3, 2013

Truncus Arteriosus - Heart Defect

 A fellow adoptive and blog mom, Adeye, has been compiling a resource list over at her blog No Greater Joy Mom.  She has highlighted a different special needs almost weekly for the last many weeks.  Anyone who has adopted a child with that special needs can link their blog into it, so others who are adopting a child with that need can read them.  It can bring them encouragement or answer questions they might have.  I think it is a great idea and have enjoyed reading all the blogs people have linked up to her lists. 
Today's post was to highlight adopted children with heart defects.  So today I decided to write a bit about Elizabeth's heart defect so it might educate and encourage anyone to adopt a child with  her defect. 
Elizabeth's' heart defect is a very rare one.  It requires life long heart care and surgeries.  It is called Truncus Arteriosus.  Basically she was born with a three chamber heart.  Two of those chambers are plumbed normal.  But the undivided chamber, instead of a pipe coming out of each side, there is one huge trunk coming out and then it "Y"'ed off and went to where they were supposed to go.  
These children are born blue and in many cases, like hers, they knew from her fetal ultrasounds, done thru out the pregnancy, that she would be born with this.  So as soon as she was born they were able to be prepared and stabilize her and do open heart surgery.
The surgery to repair this is to divide the one large chamber by putting in a patch and make two.  Then to take the Y and block off one of the arms, letting the blood that flows out the camber it is attached to and thru the trunk, continue on down the arm of the Y that was left open.  The other arm that was blocked off is then plumbed into the new other chamber of the heart with an artery from either a cadaver or animal.   So you end up with a very patched up heart and the ongoing trouble is, they have not found another way to do it and not use an artery from a cadaver or animal.  That artery does not grow with the child.  It is dead tissue.  It also calcifies and gets cracks, pinholes and tares in it over time.  Very serious and dangerous.  So these children, that are born with this, will need many open heart surgeries, every few years all their life during their growing years and then anytime that piece starts to deteriorate in their adult years.  
When we found out that Elizabeth needed a home, we knew she had a heart condition and it was explained to us what all was involved with it.  She also had many other medical things going on, many related to her heart. Tim and I had been praying for and ready for our next child.  We prayed about it and felt very strongly we should take her even though we felt very under qualified.  So we made a commitment to God and  her and loved her no matter what came along with her.  To tell you the truth she had so many other immediate life threatening things we had to keep an eye on, like breathing (she was trached and plugged often) and not eating (heart babies often have a very hard time having the energy to eat) that her heart condition really took a back seat for a while.  We were told that she would need an open heart surgery every few years to replace the piece.  Since she had just had her repair at birth it was the last thing on our minds with all the other issues going on.  
She was very medically fragile, so we prayed and trusted in God for each day.   She was on so many machines that had alarms on them and they alarmed all hours of the day and night.  Her care was intense in the beginning and I had nursing come into our home to help and give me some relief when I needed it.  
Boy, this is sounding like it is really going to encourage someone to take in a child with this.  Right?  Ha ha.  Truly though.  I want people to see and realize the seriousness of it all.  What you heard so far is the medical side of it all and truth be told, medical stuff can be very very daunting and scary.  
But the second part of this is from the spiritual side.  Because it shows that God is who He says He is.
He is faithful.  He is true.  
He helped Tim and I thru every day.  Every step. 
He saved her life time and time again and did so many miracles I can not remember them all. 
I look back at her life and it was all God.  You see, if God asks you to take a child.  He will equip you to care for it. 
It might not always be easy.  But it will always be rewarding, it will always be worth it, that child will always be a huge blessing to your home.  Because God asked and you said Yes!
So many things that we were told by medical professionals was going to happen, never happened.  Not because they were not going to happen anyways.  They didn't because God showed us His mighty hand of healing and gave us grace.  
We were told she would need these open heart surgeries every three years.  She had the one at birth and when she turned  4 she started to show an enlarged heart and high pressures in her heart.  The doctors were able to place a stint in that cadaver artery and that bought us a bit of time.  Doctors let this heart condition worsen to the point of congestive heart failure before ever doing the surgery.  As the surgery is so life threatening in and of itself.  So at four years old they did her open heart surgery to replace that piece with a bigger one.  The doctors told me when they took out the old one it was so calcified it just crumbled in his hand.  Talk about a miracle!  That it didn't do that from the pressure before the surgery!  They said she would be in the hospital for two weeks.  She did excellent and was home in five days!  And so far, believe it or not, she has not needed another open heart surgery since!  God has helped this one repair to last 6 years!! and we are all just amazed and give glory to God!  She goes to the heart doctor every six months for EKG and ECHO (ultra sound of her heart)  She actually has an appointment with him this month.  Every time we go we wonder if it is getting close to "the time" and the doctor says he doesnt understand it but it all looks and sounds great.  See ya in six months.  Praise God.  
We were told she would never talk.  The nerves of our vocal cords run all the way down into our chest cavity and when they did the first open heart surgery they either stretched or cut those nerves and paralyzed her vocal cords in the closed position.  So she needed a trach to breath.  But also was not supposed to be able to ever talk.  But talk she does!  Even though one is still paralyzed and the other doesn't have normal movement.  She talks, sings and her voice sounds very normal.  
We were told she would never walk.  Because of lack of oxygen to the brain at birth she has Cerebral Palsy (low tone)  She was so floppy that she could not hold her hips under her trunk to support her weight to walk.  They ordered her a special walker and we started to pray about her being able to walk.  The walker arrived 2 and a half months later and she was cruiseing the furniture by then and almost walking.  She only used the walker for a couple of weeks and didnt need it anymore.  
I could go on and on.  Her life is one miracle after another.  I don't want to even think about our lives without her and all that we would have missed if we had said no to adopting her.  The growth in the Lord. The faith built and lessons learned.  Our beautiful daughter who will be 11 this spring is a living walking miracle and we have been beyond blessed by her presence in our home.  I am humbled that the Lord trusted us to raise her.  She has been one of my hardest kiddos to raise. Surprisingly, the hardest part of raising her has not been her medical issues, though they were hard at time.  It has been her behavior believe it or not. :)
When God asked us to say yes to adopting her, we got a beautiful daughter that loves life.  A daughter that worked so hard to get where she is by the grace of God.  A daughter that is bubbly, happy, loves to color, sing, draw, swim, ride her tricycle and takes ballet.  That is what we got! 
She is family.  Part of our family.  A daughter, sister, niece, granddaughter,cousin... and we think her heart, is just beautiful!

Psalm 103:2-4 Bless the LORD, O my soul, and forget not all his benefits:   Who forgiveth all thine iniquities; who healeth all thy diseases;   Who redeemeth thy life from destruction; who crowneth thee with lovingkindness and tender mercies; 

Matthew 19:14  But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven.

Many blessings on your life, 

susan

5 comments:

  1. I LOVE this post!!!!! Gods grace is so evident thru this little princess... thank you susan for posting this.

    ReplyDelete
  2. What a beautiful testimony of our Amazing God! You have such a wonderful family - and I am grateful for your blog - it encourages, uplifts and inspires! God bless!

    ReplyDelete
  3. Thank you cindie and Anonymous for taking the time to comment. It always uplifts and encourages me to know people care for us as a family! Our God is truly amazing, I agree. There are no words or enough time to share all He has ever done for my family. So many miracles. I am forever grateful and stand in awe of Him. Humbled to the core. Blessed beyond measure. I will serve no other. Blessings upon you both and God be with you!

    ReplyDelete
  4. Great Post!
    Cintia
    Blogger, A Saving Love…that will change a Child’s Life!
    Cintia@ASavingLove.com | www.asavinglove.com

    ReplyDelete
  5. Thank you for the encouragement Cintia!

    ReplyDelete