daughter with partial trisomy 18 and 8p deletion

Michelle - posted on 10/19/2010 ( 2 moms have responded )

Hi everyone,
My name is Michelle and our daughter Renee is almost 20 months old and she too was born with partial trisomy 18 with 8p deletion. We live in MA and Renee was born at a local hospital but then quickly transferred to Boston Children's Hospital because she was born with a condition called Tracheoesophageal fistula and Esophageal atresia and she had surgery at 12 hours old to connect her stomach and esophagus. Renee then spent the next 6 weeks at BCH where she underwent open heart surgery at 5 weeks old to repair 4 holes in her heart. A week after her heart surgery we were told the results of her genetic testing; the docs told us there was little known about her condition and that they could not tell us if she would live past her first birthday, how she would develop mentally/physically or what to expect from her and I was even told by one of the nurse practitioners that as both my husband and I have to work that we could look into longterm care for her. That was like a punch in the stomach to me and it made me so angry, how dare you tell me to put my child away somewhere when you can't even tell me how she's going to develop? Thankfully we did not listen to her and although Renee is more challenging to care for than your typical 19 month old child I wouldn't have missed caring for her for anything. My husband and I live with my parents and my dad who is retired is her primary daycare person. Watching the two of them together is such a beautiful thing, he is her BFF and they just adore one another. Developmentally Renee is at approximately a 6-9 month old level, she can sit when propped into position, she is starting to commando crawl with help, she rolls all over the place, and she has occasionally blessed us with saying "mama" and "dada". Renee takes most of her nutrition by a G tube right now but she also takes quite a bit of pureed food by mouth and currently her only restriction is no thin liquids. We have our fingers crossed that she will pass her next swallow study and we can then begin to wean her off her feeding tube. She does not need any suplimental oxygen and the only medicines she takes are prilosec for GI reflux and furadantin for Hydroneuphrosis of her kidneys. She is such a sweet baby and we are blessed to have her in our lives. I would love to connect with any other moms that have similar diagnoses and if you live in our area that would be a bonus!