Has anyone tried this feeding technique??

[Jenna @ Phx Children's Ho]

Hi all!
I am a speech-pathologist at a Children's Hosp. in the West, and I have a newborn on my caseload with a complete bilateral cleft of the lip and palate. We tried a Haberman feeder twice today with not-so-great results. Mom has been syringing milk into his mouth - which takes about an hour for 20cc (2/3 of an ounce). I read in a textbook that children with severe clefts such as this one can do "just fine" with a preemie nipple that is cross cut pretty wide, then compressing it with their tongues against any palatal bone that is intact. Has anyone tried this? Nursing is going to attempt it this weekend, and I may even go in to see how he's doing. Does anyone have any other ideas that are better than syringing (this is so time-consuming and unnatural). THANK YOU for any help or pointers you can give me and the parents!!!

[Angela]

Jenna,
I have heard of other mothers using the preemie nipple cross-cut and having good results. My son was born with a bilateral incomplete cleft lip/palate. He was born at a small hospital and they were pretty inexperienced...they gave us the Ross cleft palate nipple (it looks like a regular nipple at the base, but then has a long skinny nipple). Zac was able to just kinda gum at it, and it dripped slowly even without any work on his part. I know it isn't the preferred choice for a lot of doctors, but it did a great job of feeding my son. (He's 19 months old now and is able to suck out of a straw!!!!) Probably not much help to you...but maybe. Angela, mother of Zachary, 19mos, bclcp.

[Tina in North Dakota]

My daughter was born January 01, 2000, with a cleft of the soft palate and spent 3 weeks in the nicu. We have used the preemie nipple, regular nipples, sqeeze bottles alot of different nipples, finally nurses went to a conference and came back with a cleft palate nipple, made in China, from Children's Medical Ventures. The nipple is soft on one side and harder on the other, with a cross cut hole in it. There is a spacer at the base of the nipple that allows the milk to come into the nipple with each suck but doesn't let the milk back into the bottle, less air in the tummy. Before feeding you take the air out of the nipple and allow some milk into it. The nipple is suppose to be hard side up but my Madison likes it hard sie down. The 800 number to order this nipple is 1-800-377-3449, Hope this might help somebody else as well. Good luck!!!

[AML - Tal's mama]

My son, Tal, was born in April of 1999. We knew about his lips and were expecting it. At birth we found out the palate was cleft also. His lips had a bilateral cleft but the palate was cleft on the right side only. The doctors were concerned because of how wide his lips and palate were. We checked out several cranofacial doctors before we found our guy. (for any of you looking for a specialist we went to Dr. Hagerty he's in Charleston,S.C. at MUSC childrens hospital and he's wonderful with babies - my son has never cried at a visit. Tal's lips and palate had come together a little but it was still a wide hole in his mouth. He was 5 months old when he had his lips repaired. The thing about this doctor is he doesn't use stiches which causes less scaring. His father developed a skin glue that he used on
Tal. He had a stich (one little stich) above his lips on both sides under the nostral. He also had 3 stiches that kept his left nostral shaped and reinforced the glue there. So all together he only had 5 stiches in his face. That was 4 months ago and his scars are barely noticeable. So if you are in the same boat we were in just 9 months ago looking for a specialist keep this one in mind. And for all new mothers reading this it seem awful but you'll get through it and my son has been a happy, healthy, wonderful child in spite of all the things he's been through. I feel bad because of all the things he'll go through in life but for a while I felt it was some how my fault. Don't do that--it upsets you and it takes away from enjoying your baby. Good luck!!!

[nancy@pierrerobin.org]

Hi:


I used the Mead Johnson Cleft Palate Nurser with my son and made the cross cuts in the nipple larger. I also used a sippy cup with him. I founded a group, Pierre Robin Network, and many of our moms have had great luck with the Pigeon bottle that someone mentioned in another post. You can get those from Children's Medical Venture. You can check out our site, <a href="http://www.pierrerobin.org">http://www.pierrerobin.org</a> and go to the equipment section for information on the different types of bottles our kids have used.

[Colleen R]

Don't know if you're still seeking responses to your posting, but just in case... My daughter Laura was born 5/19/00. Breastfeeding proved to be impossible, despite the coaching and coaxing of the sometimes rabid lactation consultants. On a side note, I felt extremely "guilted" into breastmilk. I am a definite advocate of breastfeeding, having breastfed my two previous babies, but the pressure the lactation trolls presented was overwhelming. I sacrificed bonding time with my baby trying to maintain a pumping schedule. I have since been able to taper the pumping schedule to four times a day, and still have plenty of milk (my mother's freezer is nearly full.) But having gone through it, I would definitely formula feed if I had to do it over again.


Anyway, back to feeding. We finally settled on the Mead Johnson bottle and an orthonditic nipple supplied by Similac through the hospital. We modified the nipples by adding cross cuts. Laura's weight gain was extremely slow, but improved as the nipples got softer through use.


Now these nipples are wearing out, and we've resorted to preemie nipples with cross-cuts - exactly the technique you recommended! Unfortunately, it took us three months to find this technique, but it is working. I would prefer to find a soft orthondic nipple, because that is what Laura is used to, but as long as she's gaining weight and not choking while she's eating, I'm satisfied.