You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: Hailey's Story (Pierre Robin)


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Hailey's Story (Pierre Robin)

I have a daughter who was born with Pierre Robin Sequence, soft cleft palate, and suffers with reflux. We have had oral feeding problems since birth, we use/used the Mead Johnson cleft palate bottles/nipples and the Haberman Feeder. Purchased the Haberman Feeder when she was 4 months old and did not have a great deal of success with it. We did not find out about the Haberman until we found Widesmiles. I wonder if she used it from birth if our success rate would be greater, I think she's just more use to the Mead Johnson. We supplement oral feedings with an NG tube.

Hailey was not in any type of ICU, we were able to bring her home from the hospital on day 4. I only had to leave her there one night alone. Hailey's birth weight was 7 pounds. Her first day she gained to 7.2 then dropped to 6.11 and that's what she weighed when we took her home. Her 2 week PED check had her weighing still 6.11. That concerned the PED and from that point up until Hailey was 3 months old we had weekly weight checks with the PED. Some weeks we had 2 weight checks. Hailey was not gaining weight. The PED increased her formula from regular 20 calorie formula to 27 calorie formula and that helped. Her weight gain is still slow, but she is gaining weight and doing ok. We had/have oral feeding problems because of her tongue and her reflux. At first we tried an NG tube at night on a drip - making up for what she didn't take in during the day. That didn't work at all - somehow she would work the tube out and the formula would get into her lungs. She'd wake up drowning. Then we had to switch to the NG tube in all the time, and supplement with each feeding. That has worked so much better for us. Nurses use to come to the house to change the tube but it was harder for me to watch them do this to Hailey. As much as I hate it, it's easier on me to change the tube myself. I do that twice a week. Her weight gain has been better with the supplemental tube feedings. Agreeing to the NG Tube was the best thing we did for her.

She has been on an Apnea Monitor since birth. Hailey's breathing is good. The Apnea Monitor has gone off for apnea only 3 times and that's when we first brought her home. In the beginning we use to hear a gagging noise frequently, but that was only in the very beginning, and she use to pull her chest into her spine when she would take a breath. But she's been breathing good for some time now. We do feel that around 3 months old her tongue started to come forward a lot. When she sticks her tongue out you can actually see it real good now, and her sucking has improved a little bit. Around 6 months the Apnea Monitor started going off for apnea. It appeared that her breathing was too shallow at times for the monitor to register. We have not had to do any type of intervention.

Ear tube surgery was done at 4 months. The Dr. discovered an ear infection when Hailey was one week old. It took 3 different tries on Meds before it was brought under control, and she had been on a daily maintenance dose of Augmentin up until after ear tube surgery. Each time her ears were checked there was still some fluid. The Dr's knew right from birth that she would have to have tubes put in and planned to do it around 3 months. But then they decided to have a sleep study done and wait for the results of that before surgery. They thought she would have to have a tongue-lip adhesion and wanted to do it when they put the tubes in, they felt the sleep study would determine the necessity of the tongue-lip adhesion. As it turned out, the sleep study showed sleep apena due to silent reflux. This surprised us since she wasn't setting off her Apnea Monitor. As for the tongue-lip adhesion, they thought the tongue-lip adhesion would help the breathing and the oral feedings, but couldn't guarantee it would be a success, therefore my husband and I decided against this procedure. We didn't feel Hailey had a breathing problem and felt she was thriving on tube feedings, we couldn't see putting her through the surgery especially if there was no guarantee it would work. The Dr's said if she had that done she/we would have to learn how to eat all over again. We had been through enough with eating adjustments and we were not going to take steps back. The ear tube surgery went very well, we were in and out of the hospital in 3 hours, the actual surgery took 3 minutes. They were concerned that she might stop breathing during the procedure because the anesthesia aggravates the reflux, but there were no problems. The Dr said he took a lot of fluid out of her ears. Immediately we noticed an improvement in her hearing. She was 6.5 months old before she was free of ear infections.

We spent some time with the Feeding Team at the local Children's Hospital. We ended up having a swallow study done. We hoped it would help us determine why Hailey had such a tough time with oral feedings. The conditions were far from ideal and as a result the swallow study came back with very negative information. They ended up saying to us "we don't know what to tell you in order to help Hailey feed better orally." What a waste of time and money that was. They didn't even inform us of the option of the Haberman Feeder, when I questioned them on that they never return my calls.

At around 6 months oral feedings got better - only 20% of the formula went through the NG tube. The last try with medication to clear up the ear infections had a side effect of loss of appetite which caused us to take many steps back with oral feedings, we are now back to approximately 50% of the formula going through the tube. On the good side, this last medication did clear up the ear infections. Hopefully she won't have this NG tube until she goes to High School. We have not been successful feeding baby food by the spoon. In the beginning she was doing rather
well but she did not progress, it's to the point now where she refuses to open her mouth for the spoon feedings. I have tried anything I could think of, thinning, thickening, store bought, home made, nothing worked. I continue to try to spoon feed every few days, can't give up. The PED thinks this will improve once palate surgery is done. That is scheduled, Hailey will be 13 months old.

We had a genetic ultrasound done around 19 weeks. My husband's family has a history of cleft palates/lips and we wanted to rule that out. The DR spent a great deal of time searching for a cleft and could not see it, he did make mention to the fact that Hailey had a small chin, but never mentioned PRS.

Unlike some stories I've heard, Hailey's PED knew right away that she had PRS. I have a great deal of confidence and respect for Hailey's PED. She's a younger woman who has spent a lot of time with us. I have less regard for the DR's from the local Children's Hospital, they seem to be more interested in Hailey's problems for research. The Dr's at the Children's Hospital tell us they see approximately 5 PRS babies each year and don't have enough information on PRS. We have really been on our own until we found Widesmiles.

Our biggest problems are the oral feedings and reflux. We feel ourselves to be very lucky. Sure, we would have like to have a perfectly healthy baby, but we look at it this way, our situation with Hailey could be so much worse. She is a normal baby in every way with the exception of a few special needs. These needs can be met and this is manageable. I'm grateful for the problems we don't have.

 


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