Sarah's Story

I knew that when I got pregnant with Sarah there was a chance that I could have another baby with a cleft palate, but like all moms I hoped that she wouldn't have one. I am not sorry that she has one and I do not have any regrets.
Sarah was born with a U shaped cleft of the hard and soft palate and Pierre Robin Sequence. She also had a heart murmur. We also found out by the time she was 2 months old that Sarah had reflux and now know that the reason she was having so many problems: she was aspirating.
I was induced with Sarah on my due date as I had complications in my last 3 weeks of pregnancy and they didn't want me to go over my due date. I had blood in my amniotic fluid she had turned 3 times. When she did the last time she tore something so they induced me on Aug. 13, 2002 at 8:00 in the morning. It was a really good labor and I had her at 12:25 that afternoon.
I remember that when I had her I thought well she doesn't have a cleft palate because her cry was so loud. When I had her sister Kayla her cry was so soft. I asked the nurse if she was going to check her palate. They did and said that she had a cleft palate but it wasn't that big. But when I got her I checked her and I saw that it was her whole palate; both hard and soft. I was sad but thankful that she was here and I knew that we could handle it since we had done it before.
I asked the nurse for a Haberman bottle since knew I wouldn't be able to nurse her and I also requested a breast feeding pump and the kit so I could get started for her to eat.
Sarah weighed 7 lbs 3/4 oz and was 20 inches long at birth.
They took her to the nursery and cleaned her up. We didn't get her back till after midnight because while she was in the nursery she tried to quit breathing. They had her in an incubator with O2 and they ran a whole bunch of tests on her. They weren't sure what was the matter. Come to find out when she was 3 weeks old she also has Pierre Robin Sequence. That is why she had so many breathing issues and more feeding problems than our last baby.
I remember that we didn't sleep very well. They sent us home when Sarah was 3 days old and we knew something was wrong other than her palate. We could hear her breathing in another room and she seemed to have a lot more problems. I would say that we didn't sleep very well at all.
When we found out what PRS was we looked it up and requested an apnea monitor. At first she had to wear it all the time when she was asleep, and we had to change her positioning a lot so that she could breathe.
When I took her to the first plastic surgeon, he told us that she had PRS and he would see her in 4 months. He said that they would do a Pharyngeal flap to repair her palate. I was like, "no!" After asking her Speech Therapist & posting on the cleftAdvocate group I decided that we needed a team for her. So we took Sarah to Dallas when she was 3 1/2 months old.
Taking our daughter to a craniofacial/ cleft palate team is the best decision we could have ever made.
When we took her to Dallas they were really surprised that Sarah didn't have a trachea. Most babies that have PRS have one and are tubed. So Dr. Genecov and all the other Drs. checked Sarah and they decided that Sarah needed a jaw distraction. I asked lots of questions and they decided that we were to come back in a week & have it done.
I went and researched it. I posted on the Pierre Robin Network and on the cleftAdvocate site. That is when we went and looked at our friend Morgan's son's site. That was the best decision. Her site explained everything in detail; all the good and negative about the surgery. I remember being so scared but I knew what to expect and we went ahead and decided to do it.
What they would do is put a device in her to help her chin grow and we would have to turn the screws. They did the surgery on Dec. 20, 2002 and it went really well. They also put tubes in Sarah's ears at the same time as she had fluid on them. We went home on the 23 of Dec. We had to turn her screws for the distracter for 3 weeks. We turned them 3 times a day. It was so amazing to see the difference the distraction made with Sarah. Her chin grew and her breathing was so much better. We couldn't hear her like we had before. She could eat and did not have so many problems. It was strange... We would check her more because we didn't hear her breathing like before.
The whole time we did it we had to go back and forth to Dallas once a week to make sure that her chin was growing and to have her checked. I will say that it was very hard on all of us turning the screws it took both my husband and I to do it.
We had Sarah's cleft palate repaired in March of 2002. They also removed her jaw distraction device at the same time. There was a lot of swelling with her repair. Sarah had to wear arm restraints for 2 weeks and wasn't allowed to have her bottle till after her palate healed. We used a soft sipp bottle and a syringe with tubing to feed her. She wasn't very happy with us. She couldn't suck on anything because if she did it could undo all the work on her palate.
I knew that Sarah had developed a fistula in her palate after repair because she still had milk coming out of her nose. We found out that babies who have PRS have a 25% chance of developing one. The good news is that her fistula closed on its own, all but a hairline within a couple months. We were so relieved. After Sarah's palate repair she wouldn't take the haberman anymore so we had to find a new bottle nipple for her to use.
I want to say how important it is to research and learn all you can when your child is born with something, and that you need a lot of support from other families that have been there. They can help and you don't feel so alone. I know that without all the support from our family and friends online it would have been really hard. We would have been lost without them.
We want to thank everyone that has been here for our family and Sarah. I know that everything we have gone thru with Sarah has been really hard, but I would do it all again in a second. She is the most amazing person. She is 16 months old now she is where she is developmentally because of all the help we have had with her. We also have had her in speech & ECI since she was less than 2 months old. Her Speech Therapist has been there for us through all of this and helped us with her feeding issues and her speech. We want to thank her for all her help and being there for us through all of this also.