Mended Hearts Open Forum

Expand all | Collapse all

Hello! introduction

  • 1.  Hello! introduction

    Posted 08-19-2019 18:04
    Hello and thank you for allowing me to join this wonderful group! I was referred here from a mended little hearts member!! My name is Jamie and my sons name is Adrian. We  are from Buffalo NY but currently receiving care from UPMC Children's hospital of Pittsburgh. Adrian was diagnosed 20 weeks in utero. His 1st diagnosis was dextrocardia. We were later sent in for a fetal echo which revealed he also had HLHS, pulmonary stenosis, and asd. after this, appointments really started to pick up and my drs. wanted to keep a close eye on him, and by close eye I mean sometimes 3 different appointments 3-5 days a week. When I was 23 weeks I started going for NSTs (non stress tests) which we found out our little boy was special and couldn't get stress tests because the monitor couldn't correctly read his heart rate so for that we were sent twice to our local children's hospital because he scared the nurses. Fast forward to 26 weeks we discover he had an Arrhythmia, another diagnosis. One of My 33 week ultrasounds gave us all a scare and were rushed to Rochester strong memorial where I had to spend the night. That day his heart rate was reading at low 60's mid 70's. his one fetal specialist thought it was hydrops which can be fatal but thankfully it wasn't, however he was then diagnosed again with another problem...3rd degree heart block. Things were steady up until my very last Fetal echo. since he was fully developed (39 weeks) and he was cooperating for pictures for once!! lol!! we discovered a few more defects. Finally I gave birth via c-section and my little Adrian was born 05/14/19 3:10pm 7lbs 9oz!!!! his 1st day he did great! His 2nd day unfortunately he had a bad oxygen drop and had to be intubated. Our cardiologist that was taking care of him at that hospital sat us down and and told us every single defect he had and those added up altogether to 12 defects. Those defects are,  heterotaxy, primary ciliary dyskinesia, polysplenia, 3rd degree heart block, abdominal situs inversous/ambiguous, mirror imaged dextrocardia, transverse liver, DORV, unbalanced AVSD, left sided RV, right sided LV , hypo-plastic right sided LV, common AV valve, aortic artesia, interrupted IVC with R-azygous continuation to RVSC right sided atrium, hepatic veins, absent bridging vein, right aortic arch w/mirror image branching (hypoplastic), dysoplastic pulmonary valve, and mild PR.... PHEWWWWW!!!! alot for such a small boy but such a fighter :) we were informed that we could not recieve care at rochester and had to be transffred to pittsburgh. we are now here, one month on 1A status for a heart transplant and can't wait to get baby boy home! so sorry for it being so long, I even left out a surgery but didn't want to make this too long! hope this gives everyone some hope!! 

    Jamie Ferraro
    Buffalo NY

  • 2.  RE: Hello! introduction

    Posted 08-20-2019 07:46
    Hi Jamie!
    Welcome to the group!! I am in the Pittsburgh area too and my son received his care at Children's Hospital of Pittsburgh! He is 10 now. We have lots of great members around the Pittsburgh area and lots of experience so if you are ever interested in some face to face support let me know. It sounds like you have had a whirlwind of a time lately. You're little one is adorable! Good luck with the transplant. You are in amazing hands in Pittsburgh!

    Andrea Baer
    Grapeville PA
    (724) 396-7820

  • 3.  RE: Hello! introduction

    Posted 08-21-2019 17:00
    Hello Jamie!

    Thank you so much for reaching out to this group!  It sounds like little Adrian does have a lot  going on but I cannot miss his smile!  It's captivating and does remind me of the hope that babies bring!  They are such troopers!  I was a trooper once as I also was born with a congenital heart defect, Tetrology of Fallot, which is actually four defects:  ventricular septal defect (VSD), pulmonary stenosis, over-riding aorta and ventricular hypertrophy.   The doctors, surgeons and nurses took great care of me at Children's Hospital!  I still go there at their Adult Congenital Heart Clinic, so I guess you can say, I never left!  I'm 52 now and have lived an active life and have two adult children.  I know Adrian is in good hands here.  I will pray for him and for you.  I tend to think I had it easy as I didn't know any better when I was a child.  Everyone was so good to me and caring and sweet.  I felt loved and that is really what matters to our babies.  The bonding and love is most important!  Looks like Adrian has that for his smile says it all!   I will pray for Adrian's healing and for you, Jamie, to find strength and peace.

    Holding you in prayer,

    Tina Marshall
    Cranberry Twp PA