I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Wednesday, February 4, 2015

Faces of CHD: Garrett

At 31 weeks pregnant I went into the hospital because I was having contractions. This was my first pregnancy and I thought I was having Braxton Hicks contractions, normal for that stage in pregnancy.  The hospital did an ultrasound and told us our son Garrett had Fetal Hydrops (over 2lbs of fluid under his skin) and his heart was enlarged taking up over 75% of his chest (Dilated Cardiomyopathy).  To say we were in complete shock is an understatement.  They admitted me and within 5 days I gained 40lbs of fluid and Garrett continued to gain fluid in utereo. It was decided the morning of August 25th, 2008 an emergency c-section needed to be done to save my life and try to save Garrett’s life.  Dr’s told us only 25% of cases with Fetal Hydrops survive delivery and not to expect to hear him crying because he had so much fluid and underdeveloped lungs.  I just knew he would cry and when Garrett Francis Stramondo came into this world he made 2 little squeak noises.  
Garrett was put on a ventilator and iv heart medications immediately after birth.  He was 5lbs 12oz at birth because of the extra fluid but in a week shrunk down to 3lbs 2oz which was his true weight.  Dr’s did not know what caused the Dilated Cardiomyopathy, nobody in our families has it. Also, Garrett was hypotonic (low muscle tone).  Dr’s were hoping he would improve once he came out and was on the heart medicines but he didn’t.  We were told he would need a Heart Transplant to survive, he would need to be 6lbs to receive a new heart and he would not be strong enough to get to 6lbs without his heart giving out.

We were not giving up Hope.  We spent days and nights with Garrett talking and praying to him.  
We contacted all the hospitals in Florida that did heart transplants and only 1 would even interview us, all others said Garrett was not a candidate because he was too small.  We met with Dr Asante-Korang at All Children’s Hospital, St Petersburg, Florida when Garrett was 16 days old and he looked at Garrett’s file and said “he’s a very sick boy but we’ll do all we can to try and save him! We will fly him here tomorrow!”  We were so grateful that someone took a chance and we went back to the Winnie Palmer Hospital in Orlando, Florida with more Hope that our son would have a chance. 
On September 17, 2008 they flew Garrett by helicopter to All Children’s Hospital.  His heart rate was in the 220s and he wasn’t even moving so they decided to put him on paralyzing medication.  We trusted the Drs but were not to happy seeing our son paralyzed.  Garrett had to fight off 2 blood infections and a urine infection before being listed on the heart transplant wait list.  When he was listed he waited 50 days before we got The Call and it was just in time, we had about 24-48 hours before we lost him.  On November 16, 2008 weighing only 5lbs 13oz Garrett received his new Heart.  We are so thankful to God, the Donor Family and the Drs and Nurses.  

A muscle biopsy showed he has a Mitochondrial Disorder called Complex IV Deficiency.  Garrett has had Physical, Occupational and Speech therapies his entire life.  We couldn’t hold him for 4.5 months in the hospital or pick him up so he has some sensory issues he deals with also.  He has had a history of blood clots and has a stent in the main artery from his heart to his brain.  He had a Gtube for 1.5 years because he was iv nutrition from birth to 5 months and couldn’t bottle feed but now eats everything by mouth.  Garrett didn’t walk until he turned 3 years old and still has limitations with endurance and balance. Through it all he’s remained a fighter! He Amazes us each and every day with his strength, courage and bravery.  He started PreK this year and we’re so proud of him.  Although a heart transplant is not a cure and Garrett has to have tests once and month and take a lot of medication, it has given our son Life, a life he would’ve never had, he wouldn’t have survived past 3 months old without this precious gift from his angel baby donor.  Thank God for his Donor family, he's doing well and 6.5 years old now!

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