Who's Who

Jennifer W (UCLP) (co-cl-wilkinson7764) SAHM to Ashley Cate (UCL & AR) born June 18th 2003 & wife to Wade. Ashlley PS is John Teichgraeber with University of Texas. Ashley's surgery was done 11-26-03 at 5 months (at Memorial Herman Hospital- Houston Texas) after using the NAM for 4 months. Her next surgery should be her bone graft done around 8 or 9 years old. We live on the Gulf Coast of Texas.

Cathy (dapdoo) DD Ann (4/6/04) was born with a soft cleft palate that was not discovered until after she was born. Her palate repair was 3/22/05 at LeBonheur Children's Medical Center in Memphis, Tennessee by Dr. Robert Wallace at UT Medical Group. We have been told that we have an 80% chance of her not needing another surgery and we don't go back to see the plastic surgeon again until she is 2.

Karen (co-cl- krbh2001)-DH-Matt, Mom to Emily (nca) and Michael, bilateral soft cleft palate (bcp), born in 1997, and the cleft was not found on an ultrasound. Initail palate repair was done at 13 months. Tonsilectomy, adenoid removal, and pharnalogical flap (p-flap) surgery at 4 years; ear tubes at 5 months, 13 months, and 33 months. Speech therapy from age 22 months to present. Located in Central Indiana.

Melanie (mc1973), DH Steve, Joshua born 9/7/2004. Born with complete bilateral cleft lip and palate. This was discovered during our routine 18 week ultrasound.Plastic surgeon and dental surgeon both at Boston Children's Hospital
Dec 21, 2004 - Latham Device installed---Feb 1, 2005 - Latham removal/lip - nose - gumline repair / palate appliance installation---June 28, 2005 - scheduled palate repair - ear tubes installed----Expected bone graft surgery at 8 or 9 years of age. We started the Joshua into the enrollment process of early intervention for speech therapy. To date, we have not started this yet.

Chris (scootermom32), dh Bob. Mom to Tommy and Emily (both nca). Mom to David (9/11/03), cleft palate repaired 6/04 by Dr. Michael Boyajian at Children's Hospital in Washington, D.C. David was also born with hypospadias, hydronephrosis, a UVJ obstruction, and small stature. Live in Northern Virginia

Heidi (liamsmom724)--DH - Bill--Liam born 7/24/03 UCL&P and AR. Cleft lip was diagnosed at a level 2 u/s at 18weeks, cleft palate was not detected until birth. DH has a family history of cleft palate, but no cleft lip, so currently they do not believe Liam's cleft is genetic. He had a lip adhesion at 6 weeks, lip repair at 4 ½ months and palate repair at 8 ½ months. He also had a palatal appliance that we used from the time he was 3 weeks old until he was 4 months old. So far no ST and no ear tubes, we didn't get our first ear infection until 11months and he's had 4 to date. Our next surgery will be a lip and nose revision around 5 years of age and sadly this will be the last surgery preformed by our current PS as he will be retiring in the next few years but will be staying on just long enough do Liam's revision. After that he will have bone graft at about 9 years old and if he choices some more work on his nose in his late teens. We live in Massachusetts and see Dr Michael Lewis and Mass General Hospital for Children.

Angela (Hermesa)SAHM to DS: Dalton UCL/CP/AR, dob 7/13/99, DS: Cameron NCA dob 9/18/00, DS: Ethan NCA dob 7/24/02 wife to Tim.Dalton’s cleft was not discovered until he was born despite having 9 ultrasounds for other problems. Dalton’s cleft surgeries have been performed at Children’s Hospital of Columbus, OH by Dr. Robert L. Ruberg M.D. Dalton also has had several sets of tubes put in his ears by Dr. Gregory J. Wiet M.D. also of Children’s Hospital.At birth Dalton was diagnosed as being severely hearing impaired. He was fitted with hearing aids and we were set up with Early Intervention and a Sign Language teacher to teach us as well as Dalton as he grew. By the time he was 3yo. he had completely normal hearing. No one has ever attempted to tell us why he was deaf at birth and gained hearing as he grew. The only thing that even sounds close is that he had severe gum ear and as his ears drained from the tubes as he grew his hearing increased. We like to think of it as one of God’s little miracles. Dalton is in speech therapy at Children’s Hospital once a week. He has made great strides in speech and has minimal hypernasality.Daltons surgeries: Lip repair 4mo-- Palate repair 12mo--3 sets of ear tubes, he now has stainless steel T-tubes (semi permanent - last longer than regular)
He will not have bone graft until he has lost his front top & bottom teeth. Still have a few years. Has lost his bottom front teeth so we are on our way.

Elizabeth - (sister to Angela - hermesa) DH: Michael--DS Austin (nca 2/10/97)--DS Derrick (nca-11/7/99)--DD Jeannie Marie (UCLP &AR--2/4/05. Jeannie's lip repair was 5/25/05

Laura (ljames103) DH-Tom--DS-Riley (nca-10/5/02)--DD-Erin (soft cleft palate). We live in Pennsylvania, about an hour north of Philadelphia. Erin has ear tube surgery scheduled for June 10th at St. Luke's Hospital in Bethlehem (local hospital) and her palate repair surgery is scheduled for August 11th at Children's Hospital in Philadelphia. Plastic surgeon is Dr. LaRossa.

Julie (julnron) DH-Ron, DS Ryan (10/93, nca) DS Ethan (11/01 PRS) palate repair 9/02, 1st set of tubes 9/02, 2nd set 8/03. Palate repair done by Dr. Bauer at Children's Memorial in Chicago. Speech Therapy, 15 months to present.

Lara (larajean) , mom to Charlie (6/15/01), Patrick (born 4/6/03 UCL & AR), and Kate (12/28/04). Patrick's cleft lip was discovered at the routine 20 week u/s which I actually had at 23 weeks. My OB (at that time) actually did his own u/s's and he got very quiet and did a very thorough check of everything else and told me the news but said he was pretty sure that the baby was otherwise perfect. My first reaction was "that is a fixable thing right?". Second reaction was "will I be able to nurse the baby. Three days later we saw a famous neonatalogist that confirmed the cleft lip and said that it was also a cleft palate. He actually got pics of where the gumline was notched and I think he just assumed that the cleft went all the way back. At birth we discovered that Patrick's palate was intact. I found this board, did tons of research and picked a plastic surgeon before Patrick arrived. Patrick wore a naso-alveolar moulding (NAM) device from 10 day old until his surgery at 3.5 months. Following surgery, Patrick wore arm restraints for 3 weeks and we taped his lip to reduce stress on his scar for 5 weeks. Patrick's gum was also repaired during his surgery and the chance is about 80% that he won't need bone graft surgery in his gum. Patrick returned to see his "team" at two years old and we were told that his speech is great and we don't need to return for another two years. A nose revision is probably in his future--probably in the teenage years. I am hoping that he will make that decision for himself.

Christie (csalmon731) DD Kyleigh - unilateral cleft lip/palate & notched gumline. DH Johnny. Kyleigh's lip was repaired on April 26, 2005 (age 5 months) at Methodist LeBoheur Children's Hospital in Memphis, Tennessee by PS Robert Wallace. Next surgery will be palate repair and will be performed at 9-12 months of age. Kyleigh lives in west Tennessee with her mommy, daddy, sissy Caitlyn (9-nca), and brother Ashton (4-nca).

Barbara (nursie1973) dh- Jon, dss Chris 16, nca, dss nathan 15, nca, dsd Dawna 14, nca, ds Samuel 9 nca, Jacob 15 months (almost) unilateral incomplete cleft soft and hard palate & Noah due 8/15/05. ear tubes 10/7/04, palate repair 12/7/04, Childrens hospital of Dayton. No further surgeries scheduled so far, no plans on speech right now.

Pam (pamsfirst)with Destiny and Celeste born 10-10-04 with bilateral complete cleft lip and palate, not discovered until birth. Lip repairs done at Riley Children's Hospital on 2-17-05 by Dr Micheal Sadove. Bone graft sugery likely later this summer and palate surgery as early as December 2005. Located in Central Indiana

Christine (Proudmommie2005) and DH Cory, proud parents of Kailey McKenna Britney born on March 1, 2005 with a unilateral cleft lip and palate and notched gum. Kailey had her lip repair on June 1 by Dr. Wilkes at the Stollery Children's Hospital Foundation in Edmonton, Alberta and will have her palate repaired at about 9 months.

Jennifer D SAHM/Part Time WAHM to Sydney (nca) and Shae (BCL & AR) born May 23rd 2001. Shae had her first and only surgery so far at NYU Medical in Manhattan when she was 5 months old. The surgery was performed by Dr. Court Cutting. Prior to surgery we did use a NAM type device to position the bone that was protruding from her mouth, back into the gumline where it belonged which is why surgery was slightly later than some. The surgery was 6 hours long and fixed her lip, created a nasal floor, created the piece of tissue called the columella that runs between the nostrils and did what is called a gingivaperenoplasty. Her next surgery should be her bone graft done around 8 or 9 years where they will harvest bone from her hip and place it in the gumline in order for the adult teeth to have bone to connect with. Currently we live in Northern Kentucky just across the Ohio river from Cincinnati. Follow up is being done at Children's Hospital of Cincinnati.

Regina (Ldybugs723) DH Gerard, DH Christopher born 7/15/03 Bi-lateral cleft of the soft palate. Repaired 5/10/04 by Dr. Stephen Harris at Good Samaritan Hospital, West Islip NY. Ear tubes done at the time of palate repair. Speech therapy started at 18 months old, continuing, and follow up yearly at the Cleft Clinic at St. Charles Hospital, Port Jefferson NY. Residing on Long Island, NY.


				*Who's Who*



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		Jennifer W (UCLP) (co-cl-wilkinson7764) SAHM to Ashley Cate (UCL & AR) born June 18th 2003 & wife to Wade. Ashlley PS is John Teichgraeber with University of Texas. Ashley's surgery was done 11-26-03 at 5 months (at Memorial Herman Hospital- Houston Texas) after using the NAM for 4 months. Her next surgery should be her bone graft done around 8 or 9 years old. We live on the Gulf Coast of Texas. Cathy (dapdoo) DD Ann (4/6/04) was born with a soft cleft palate that was not discovered until after she was born. Her palate repair was 3/22/05 at LeBonheur Children's Medical Center in Memphis, Tennessee by Dr. Robert Wallace at UT Medical Group. We have been told that we have an 80% chance of her not needing another surgery and we don't go back to see the plastic surgeon again until she is 2. Karen (co-cl- krbh2001)-DH-Matt, Mom to Emily (nca) and Michael, bilateral soft cleft palate (bcp), born in 1997, and the cleft was not found on an ultrasound. Initail palate repair was done at 13 months. Tonsilectomy, adenoid removal, and pharnalogical flap (p-flap) surgery at 4 years; ear tubes at 5 months, 13 months, and 33 months. Speech therapy from age 22 months to present. Located in Central Indiana. Melanie (mc1973), DH Steve, Joshua born 9/7/2004. Born with complete bilateral cleft lip and palate. This was discovered during our routine 18 week ultrasound.Plastic surgeon and dental surgeon both at Boston Children's Hospital Dec 21, 2004 - Latham Device installed---Feb 1, 2005 - Latham removal/lip - nose - gumline repair / palate appliance installation---June 28, 2005 - scheduled palate repair - ear tubes installed----Expected bone graft surgery at 8 or 9 years of age. We started the Joshua into the enrollment process of early intervention for speech therapy. To date, we have not started this yet. Chris (scootermom32), dh Bob. Mom to Tommy and Emily (both nca). Mom to David (9/11/03), cleft palate repaired 6/04 by Dr. Michael Boyajian at Children's Hospital in Washington, D.C. David was also born with hypospadias, hydronephrosis, a UVJ obstruction, and small stature. Live in Northern Virginia Heidi (liamsmom724)--DH - Bill--Liam born 7/24/03 UCL&P and AR. Cleft lip was diagnosed at a level 2 u/s at 18weeks, cleft palate was not detected until birth. DH has a family history of cleft palate, but no cleft lip, so currently they do not believe Liam's cleft is genetic. He had a lip adhesion at 6 weeks, lip repair at 4 ½ months and palate repair at 8 ½ months. He also had a palatal appliance that we used from the time he was 3 weeks old until he was 4 months old. So far no ST and no ear tubes, we didn't get our first ear infection until 11months and he's had 4 to date. Our next surgery will be a lip and nose revision around 5 years of age and sadly this will be the last surgery preformed by our current PS as he will be retiring in the next few years but will be staying on just long enough do Liam's revision. After that he will have bone graft at about 9 years old and if he choices some more work on his nose in his late teens. We live in Massachusetts and see Dr Michael Lewis and Mass General Hospital for Children. Angela (Hermesa)SAHM to DS: Dalton UCL/CP/AR, dob 7/13/99, DS: Cameron NCA dob 9/18/00, DS: Ethan NCA dob 7/24/02 wife to Tim.Dalton’s cleft was not discovered until he was born despite having 9 ultrasounds for other problems. Dalton’s cleft surgeries have been performed at Children’s Hospital of Columbus, OH by Dr. Robert L. Ruberg M.D. Dalton also has had several sets of tubes put in his ears by Dr. Gregory J. Wiet M.D. also of Children’s Hospital.At birth Dalton was diagnosed as being severely hearing impaired. He was fitted with hearing aids and we were set up with Early Intervention and a Sign Language teacher to teach us as well as Dalton as he grew. By the time he was 3yo. he had completely normal hearing. No one has ever attempted to tell us why he was deaf at birth and gained hearing as he grew. The only thing that even sounds close is that he had severe gum ear and as his ears drained from the tubes as he grew his hearing increased. We like to think of it as one of God’s little miracles. Dalton is in speech therapy at Children’s Hospital once a week. He has made great strides in speech and has minimal hypernasality.Daltons surgeries: Lip repair 4mo-- Palate repair 12mo--3 sets of ear tubes, he now has stainless steel T-tubes (semi permanent - last longer than regular) He will not have bone graft until he has lost his front top & bottom teeth. Still have a few years. Has lost his bottom front teeth so we are on our way. Elizabeth - (sister to Angela - hermesa) DH: Michael--DS Austin (nca 2/10/97)--DS Derrick (nca-11/7/99)--DD Jeannie Marie (UCLP &AR--2/4/05. Jeannie's lip repair was 5/25/05 Laura (ljames103) DH-Tom--DS-Riley (nca-10/5/02)--DD-Erin (soft cleft palate). We live in Pennsylvania, about an hour north of Philadelphia. Erin has ear tube surgery scheduled for June 10th at St. Luke's Hospital in Bethlehem (local hospital) and her palate repair surgery is scheduled for August 11th at Children's Hospital in Philadelphia. Plastic surgeon is Dr. LaRossa. Julie (julnron) DH-Ron, DS Ryan (10/93, nca) DS Ethan (11/01 PRS) palate repair 9/02, 1st set of tubes 9/02, 2nd set 8/03. Palate repair done by Dr. Bauer at Children's Memorial in Chicago. Speech Therapy, 15 months to present. Lara (larajean) , mom to Charlie (6/15/01), Patrick (born 4/6/03 UCL & AR), and Kate (12/28/04). Patrick's cleft lip was discovered at the routine 20 week u/s which I actually had at 23 weeks. My OB (at that time) actually did his own u/s's and he got very quiet and did a very thorough check of everything else and told me the news but said he was pretty sure that the baby was otherwise perfect. My first reaction was "that is a fixable thing right?". Second reaction was "will I be able to nurse the baby. Three days later we saw a famous neonatalogist that confirmed the cleft lip and said that it was also a cleft palate. He actually got pics of where the gumline was notched and I think he just assumed that the cleft went all the way back. At birth we discovered that Patrick's palate was intact. I found this board, did tons of research and picked a plastic surgeon before Patrick arrived. Patrick wore a naso-alveolar moulding (NAM) device from 10 day old until his surgery at 3.5 months. Following surgery, Patrick wore arm restraints for 3 weeks and we taped his lip to reduce stress on his scar for 5 weeks. Patrick's gum was also repaired during his surgery and the chance is about 80% that he won't need bone graft surgery in his gum. Patrick returned to see his "team" at two years old and we were told that his speech is great and we don't need to return for another two years. A nose revision is probably in his future--probably in the teenage years. I am hoping that he will make that decision for himself. Christie (csalmon731) DD Kyleigh - unilateral cleft lip/palate & notched gumline. DH Johnny. Kyleigh's lip was repaired on April 26, 2005 (age 5 months) at Methodist LeBoheur Children's Hospital in Memphis, Tennessee by PS Robert Wallace. Next surgery will be palate repair and will be performed at 9-12 months of age. Kyleigh lives in west Tennessee with her mommy, daddy, sissy Caitlyn (9-nca), and brother Ashton (4-nca). Barbara (nursie1973) dh- Jon, dss Chris 16, nca, dss nathan 15, nca, dsd Dawna 14, nca, ds Samuel 9 nca, Jacob 15 months (almost) unilateral incomplete cleft soft and hard palate & Noah due 8/15/05. ear tubes 10/7/04, palate repair 12/7/04, Childrens hospital of Dayton. No further surgeries scheduled so far, no plans on speech right now. Pam (pamsfirst)with Destiny and Celeste born 10-10-04 with bilateral complete cleft lip and palate, not discovered until birth. Lip repairs done at Riley Children's Hospital on 2-17-05 by Dr Micheal Sadove. Bone graft sugery likely later this summer and palate surgery as early as December 2005. Located in Central Indiana Christine (Proudmommie2005) and DH Cory, proud parents of Kailey McKenna Britney born on March 1, 2005 with a unilateral cleft lip and palate and notched gum. Kailey had her lip repair on June 1 by Dr. Wilkes at the Stollery Children's Hospital Foundation in Edmonton, Alberta and will have her palate repaired at about 9 months. Jennifer D SAHM/Part Time WAHM to Sydney (nca) and Shae (BCL & AR) born May 23rd 2001. Shae had her first and only surgery so far at NYU Medical in Manhattan when she was 5 months old. The surgery was performed by Dr. Court Cutting. Prior to surgery we did use a NAM type device to position the bone that was protruding from her mouth, back into the gumline where it belonged which is why surgery was slightly later than some. The surgery was 6 hours long and fixed her lip, created a nasal floor, created the piece of tissue called the columella that runs between the nostrils and did what is called a gingivaperenoplasty. Her next surgery should be her bone graft done around 8 or 9 years where they will harvest bone from her hip and place it in the gumline in order for the adult teeth to have bone to connect with. Currently we live in Northern Kentucky just across the Ohio river from Cincinnati. Follow up is being done at Children's Hospital of Cincinnati. Regina (Ldybugs723) DH Gerard, DH Christopher born 7/15/03 Bi-lateral cleft of the soft palate. Repaired 5/10/04 by Dr. Stephen Harris at Good Samaritan Hospital, West Islip NY. Ear tubes done at the time of palate repair. Speech therapy started at 18 months old, continuing, and follow up yearly at the Cleft Clinic at St. Charles Hospital, Port Jefferson NY. Residing on Long Island, NY.










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