Hello!
My name is Karla and mother of Sabrina who is 8 weeks old and has HLHS Hypoplastic Left Heart Syndrome.
My husband and I live in Mexico City but I was brought up in San Diego-Tijuana with my parents who live here, so I decided to come give birth here instead of Mexico so I could be with my mom. I thank God for that decision every day since in Mexico the treatment for a HLHS baby is not offered anywhere...
Sabrina was until birth a totally normal and healthy pregnancy and we didn't know about her heart problem, she was born on September 4th at 7:39pm weighing 6.6lbs and by midnight we where signing consents to get her transfered to Rady's Childrens for the corresponding tests that would later tell us her condition, It was a terrible shock!. Thank God she got the proper care at all times that made the undiagnosed situation not a problem for her 1st surgery.
She had her Norwood done on September 13th by Dr. Lambertti and went very good except for a little arrhythmia for a few minutes but got under control and everything has been up-hill since then...
She had her chest closed 5 days later and started her feedings afterwards, she started slow of course and getting tired after each feed, but got better at it and stronger every time... she also hasn't had any reflux and hope she stays that way... she had her NG tube taken out when she was at 75% of her feeds on a Tuesday and we got to take her home on Saturday that same week (October 13th) at almost 100% of her feeds (60cc's) and gaining weight very well... We did have a problem because they found a little infusion in her heart when they did an echo after taking off the pacemaker wires before we left for home, so they have been doing echos each week since then and the good thing is that it has been getting smaller each time.
The doctors suggested not to move Sabrina to Mexico until she recovers from her 2nd surgery so she could have the care she needs to make her strong. Of course we've had to make incredible adjustments because of us being here... we're now living with my parents that have been and incredible support, I'm back in my old room!, I had to quit my job in and my husband had to go back to work in Mexico City and comes to visit us every weekend, its been really hard and every time I take him to the airport on Sunday I cry and it hurts, I really miss him so. But I know that its a sacrifice that is worth everything so our daughter can be with us and have a chance for a happy fulfilling life.
Now we're home and she's been great! our pediatrician says that she is gaining weight as a healthy baby and is now 9.1lbs and taking between 80cc's and 110 cc's each time. So we're very happy and waiting for her 1st cath on November 27th, but hope everything stays like this until then and that doctors can tell us when to expect her 2nd surgery.
