[left:eaee85fc38]http://www.cherubs-cdh.org/Album/new/adame.jpg[/left:eaee85fc38]After 3 months of marriage, I got pregnant and being our first, we were head over heels. I later on went to the clinic, but I didn’t remember the date of my last period so I made one up, thinking that I was 4 months pregnant. They did all kinds of tests on me, but a week later, my Doctor called and said that my baby could have Downs Syndrome, so they sent me to the hospital for an ultrasound. As soon as the Doctor saw my baby, she said I was only 13 weeks and that the results could be wrong, but after some 5 quiet minutes, she said she saw something “strange”. She called another Doctor in and then they told me about CDH. I have never heard of that before, but she didn’t give us much hope, only 40%, but we decided to go through with it, I was going to give life to my baby, not take it away.

Throughout my whole pregnancy, they did all kinds of tests including amnio, monitoring and a lot of ultrasounds, but a lot of people were praying for Aileen, so we felt confident. Thanks to one of the Doctors I met the mother of a CDH boy, who helped me to understand things, and explaining how everything would happen, her name is Regina and thanks to her I knew what to expect.

Aileen was born on August 18, 1999, after they induced labor on me, but only 4 hours later she had to be placed on ECMO. She was just the most beautiful and perfect baby, you could never tell she was that sick on the inside. The first time I saw her I cried because since she looked so healthy I thought everything was ok, and I was going to keep my baby forever.

The hospital was 1 hour away from my house so my mom and I stayed at the Ronald McDonald House and my husband would come visit almost everyday. Aileen was everything I had ever hoped for, my dream come true, I needed her with me, I’ve prayed so much for her. At 3 weeks of age, she went under surgery and survived. 4 days later she looked so much better, she was awake for like 3 hours, and I remember that Sunday, she was just staring at me, smiling, not taking her eyes off of me for one second, she made me so happy! But the next day everything went down hill. The doctor said she’d been bleeding for hours and didn’t know what was wrong. I was just going crazy, and my mom said to put everything in God’s hands, and I did. It’s so strange how your mothers instinct tells you when it’s time to let go, that Tuesday, when I woke up, I just KNEW she was leaving us, and when I got to the hospital, they told me everything humanly possible was done, so they wanted to disconnect her off ECMO. It was the hardest decision we’ve had to make, but we couldn’t be selfish and let her suffer ant longer. The next day all the family went to visit, we took lots of pictures and we took turns to hold her. Aileen died in my moms arms while she was singing to her. Her life was so short, but yet so meaningful, I lived the happiest days of my life with her and she’ll always be in our hearts. I still don’t understand how God works, I just wish I can see her again in heaven to hold her in my arms, sing to her, tell her how much I love her. I wanted to show her the ocean, the flowers, the birds…maybe we’ll play in heavens garden soon…I certainly can’t wait!! Loosing Aileen has not only left me in terrible pain, with empty arms and an incredible need to see her, but has taken everything I had inside of me. It felt so great to have her, to be her mom that all the pain I went through is worth it. And not a day goes by without me thinking, wondering and missing her so much I want to thank God for giving me the most precious gift ever: Aileen. My mom for being there 100% and giving me strength, my husband for giving me hope and comfort and Aileen, for just being herself and making me the happiest woman in the world. “Te vere en el cielo bebita Linda….”

Written by Aileen's mom, Iris Adame (Texas)
2000