Lauren was born August 2009. Labour was pretty easy, about 15 minutes and out she popped. We were told immediately after she was born that she had a cleft palate. We were shocked. Neither of us even really knew what a cleft palate was. Immediately the nurses showed us how to feed her with a special bottle called the Haberman, where you pretty much squeeze the milk into her mouth (because she can't suck the nipple on her own very well). We both picked up how to use the new bottle fairly quickly and went home with our new bundle of joy. 2 days later after insufficient weight gain, Lauren was admitted to the hospital where she was diagnosed with Pierre Robin Sequence (PRS). Her cleft palate was a complete hard and soft palate absence. She had some minor respiratory problems (which were quickly addressed through positioning her in a certain way when she was sleeping in her bed) and was noted to have a small chin.
We met with the plastic surgeon and the cleft feeding team at Sick Kids Hospital in Toronto. They informed us that Lauren's PRS case was quite mild and that likely she'd be scheduled for palate repair when she was 12-14 months old. It seemed so far away at the time.A few months down the road, we were referred to the genetics department at Sick Kids to see if they could uncover a reason for Lauren's cleft palate. After doing some genetic testing, they discovered that Lauren had a difference in her chromosome make-up. This was a spontaneous mutation and was likely the cause for her cleft palate. Because of this chromosome difference, we could possibly expect some developmental delays.
Fast forward to today. Lauren has come along way. Lauren had her palate successfully repaired at 14 months and has had 3 sets of ear tubes. She is currently in a special needs nursery school with regular physio, occupational and speech therapy. She is in Early Intervention and participates in Kindermusik on the weekend. She is slowly, slowly progressing towards her goals with a better strongsuit and desire in gross motor. Lauren rolled at 8 months, crawled at 12 months, took first steps at 18 months and walked at 2 years. She has yet to say any words at 3 years, drools profusely, and imitates minimally. Her recent inchstones include forking food on her own, drinking from an open cup with little spilling, laughing aloud (a good hearty laugh), bouncing to music, and following some one step directions.
Her chromosomal difference has led us to world of specialists. Lauren has a neurologist, opthamologist, neuro-opthamologist, genticist, cardiologist, pediatrician, developmental pediatrician, physio-therapist, occpational therapist, speech therapist, early interventionist, ENT, audiologist, music therapist and the list goes on...Lauren has endured multiple CT scans, ultrasounds, blood tests, echoes, skeletal x-rays, hearing tests, vision tests and developmental assessments.
Lauren is a very sweet and content little girl who is coming along at her own pace. She is in no rush to get to where she "should be", frustrating and worrying her mom daily. She is loved dearly by her sister Kayla, who is often playing "teacher" to Lauren, by coaching her up the stairs, imitating her sounds and showing her how to play with her toys. Lauren's smile is infectious and she brings joy, wisdom, patience and compassion to the family.
So how do we deal with all this? I won't lie. It's completely over whelming. This is a completely new world to us. Now I have added words like Early Intervention and Special Needs to my dictionary. It is frightening, yes. And yes we are scared of what the future holds for her. But we do know that she has a very loving family of parents, sister, grandparents, uncles, aunties and cousins who are all going to help her out along the way. Help her to achieve what she is destined to achieve. She is loved unconditionally by everyone around her and has blessed our family in so many countless ways. We enjoy her each day and live our lives day by day. We have learned not to needlessly worry about the future as who knows what the future holds for anyone?