Malayna, born 2005

Malayna was born January 24th, 2005 with HLHS.  Her Atrial Septum was intact, and she had Pulmonary Hypertension.  It was against all odd she made it into the world. She was born, HUP, and transported to CHOP in the tunnel.  She had an emergency bed side angioplasty within the first hour of life and shortly after that was brought to the cath lab for another try on opening her atrial septum.  It was a temporary fix and within the next six hours, she was opened up in the OR and her atrial septum was cut oversize to help not close for the third time. This finally seemed to work but left her weak and unable to finish the rest of the surgery. 

 

She recovered for four days until they took Malayna down for another time, each time I though this was it.   OMG. Each time I grew stronger with hope as she kept coming through these great challenges. She went through the rest of stage one; they opened her up again, placed the shunt and hoped for the best.  Malayna laid in the CICU for three months with basically little to no change. People came in and recovered and went home. Some of the other kids we had met came back for stage two, we were there so long.  She was retaining large amounts of fluid, and unable to come off the ventilator. The doctors had started to talk about a tracheotomy. The nurse that told us said, "they are going to trach" her and put you guys in a private room.  Then the nurse sarcastically said "or a miracle could happen, she could come to and you could be home by next week, but I don't see that really happening". Those were her exact words! 

 

I begged for one last shot at pulling the vent, they had to take it out anyway, so why not just try.  They gave me my glory of pulling the vent with no expectations of Malayna making it. She maintained a sat of 83 on room air and within a week we were HOME! 

 

Since then, many, many challenges have been in our course but she has so far amazed me through her fight.  She has been having issues throwing up since her stage two surgery. She vomits for 4-6 days every month and no one can figure what or why it happens but it causes Malayna to be way too skinny.  At the age of three, she only weighed 20 something pounds. If it wasn't for that, everything would be so easy for her and our family. We hope that one day someone will know what causes this and know how to help her so she can thrive.  But for today, we are just grateful for yesterday and hope for tomorrow. Thank you for letting me share a bit of Miss Malayna's story. We all love her very much for being so strong.

 

Story by Malayna's mom, Jennifer - MARYLAND