My Story

[Isabelle's Mom]

My daughter Isabelle Marie was born with a cleft palate on 26 March 2000. Since then, she has had many feeding problems. When she was put to my breast, she had a great sucking reflex, but no suction. This was frustrating both to myself and my daughter. Then my "angel", a lactation consultant by the name of Marcia, came in and had a temporary solution to the problem -- a syringe, a spoon, and a breast pump. This was even before the cleft was diagnosed. Then enter another angel, Dr. Jenner the pediatrician. It was upon Dr. Jenner's examination of Isabelle the day after she was born that the cleft was discovered. When I found out, I was relieved. Finally there was a concrete reason why my daughter was not eating. There were no tears or feelings of guilt. After her diagnosis, Dr. Jenner got the ball rolling. lacataion consultants, social workers and another angel, Dr. Jane Sweeney, were called in to assist my daughter and I. Dr. Sweeney introduced to a wonderful invention -- the Haberman feeder. This unique bottle saved time and effort during feedings. My battle was not over, though. Because of the drugs given to me during labour, my ability to learn new skills was affected. Isabelle and I had to stay an extra day in the hospital to get acclamated with the new bottle. The next day, we went home. Our battle is only beginning. We see the craniofacial team on 20 April for an evaluation. In the mean time, my daughter is faced with an uncontrollable gag reflex and another hospital visit. the pediatrician is getting to know us real well.

[isabellasmum]

Hi
I am also a new mom of a baby with a cleft palate. Your post caught my attention as our daughters have very similar names. Isabella was born January 18 with a cleft palate. We were thrilled with our new daughter, but surprised about her cleft. It was not detected on two ultrasounds. Isabella's cleft was diagnosed immediately by the pediatrician attending her birth so I did not have to go through the difficulty of trying to breastfeed without knowing why she was having trouble. I am glad you received so much support from your doctors. We have also been very lucky to have received wonderful care and support from our family doctor and from the cleft team.


We also had a difficult time with feeding for the first few days. Isabella did not eat enough and became badly jaundiced. We stayed in hospital for four days. Since then things have gotten so much better. We finally settled on a Mead-Johnson squeezable bottle with a regular Nuk nipple. I have been pumping breastmilk for her and have also begun to supplement with formula when her demand exceeds my supply! Pumping every 3 hours has been very difficult and there were many times when I wanted to give up. I have learned to just take it one day at a time.


If you would like to get in touch, email me at cdino@sd45.bc.ca


Celia

[bono40@aol.com (Carey)]

Well, we sure have a lot in common! Our children share the same birhtday. George was also born March 26th, 2000 with a cleft palate. We have endured many of the same feeding problems. He is taking a Mead Johnson cleft palate nurser. (where you squeeze the bottle) He's fussy - better go. I'd love to talk to you more! Carey