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As I sit reading the many stories of others affected with moebius, I hardly know where to begin.

While most seem so much alike, yet all are different in there own way. I visit this site as a caregiver of my 3 year old great niece Paige. She has become like a second daughter to me and my family , and a joy to everyone who meets her.

Paige was born the third child of her mother and the first for her father. Pregnancy was uneventful, and problems never were considered. Like so many others often do ,we thought our family was bullet proof for complications. Nothing could have prepared us for the future as we now look back. That day and that birth, and this little girl has changed all our lives greatly.

When I couldn't get Paige to eat in the first few hours after she was born, the nurse said not to worry. A lot of c section babies have trouble because of mucus. She offered to try and by late evening had called pediatrician and had a nasal tube inserted to feed. By the next morning the Dr. had called meeting with her parents and said they would be moving Paige to a children's hospital for further tests. She explained to the family that Paige had Pierre Robin syndrome, and she had found other problems upon examining. The bigger facility could help us more.

After several days of tests at the children's hospital, we were told that the genetisist found that she had moebius , Freeman Sheldon, and also the Pierre Robin. The suck and swallow team turned her on side and she learned to eat with a squeeze bottle for cleft palate babies. Paige didn't have the hole, but will always be considered cleft because of her high palate. After many tests and 2 weeks Paige was able to come home. This was truly just the beginning. At 6 months she only weighed barely 10lbs. She had quit swallowing milk, and we were trying to feed her with spoon. More ran out than in. She also had repeated pneumonias and was hospitalized.

To make a long story short, we took her for a barium swallow study, and the same lady who taught her to eat with squeeze bottle now said she had lost the natural ability to swallow, and it was no longer safe to feed her by mouth. She was aspirating terrible, and that was the reason for the pneumonias. She was hospitalized and scheduled for g tube surgery. She has severe reflux and must have reglin 1/2 hr before her tube feeds. Her parents signed papers for a possible trach during surgery because of small airway. She thankfully didn't have to have it. This all took place when she was 6 months old.

Paige is 3 now and while everyday is a different challenge for her and us as well, she is doing great. Paige has contractions in her fingers on one hand. Both hands are slightly twisted. She has arthrogryposis, poor balance, low muscle tone. She is very weak in limbs. She is functional but does not walk properly. She has occupational , physical and speech therapy 2 times a week. She has had to and pt since she was 5 months. Speech since she was 1 year old. She does have a full vocabulary but is rated poor to people who are not familiar with her speech.

She is a very smart little girl. Can recite all her ABC'S and count to 12. Paige has severe respiratory problems, and has been in hospital frequently with pneumonia and recently with RSV virus. Her swallowing has improved but still needs g tube for feeding . She has excessive drooling and severe light sensitivity. She wears prescription sun glasses. Her vision is perfect. She has had 2 sets of ear tubes , being the youngest ever at the children's hospital to get them at 4 months. When they went to put set #3 in she had holes in both ear drums and was unable to get new ones. Is presently getting ready to get tonsils removed to open up airway. They are extremely enlarged and are obstructing airway. Adenoids need removed also, but must be left because of too much muscle weakness to hold flap in throat closed. Paige has very weak immune system, and qualified for home bound schooling for special needs pre schooling for this reason.

Have I forgot anything? Probably so, but enough has been said to see that she is a little girl who has been through more in her little life than most, but has made us all better people because of this. We truly consider her a blessing , and enjoy reading about others with moebius. I personally have learned to not major in minor things and to put things in the proper perspective.

Aunt T.

9-9-02

Paige had tonsillectomy on September 2,2002. This was done because they were obstructing airway. She had severe apnea and snoring.

She did great with surgery, although we spent the night in pediatric intensive care because of possible airway shut down. Anesthesiologist said airway is still only the size of a 3 to 6 month old child. Paige is 3 years , so it was a very difficult surgery for Dr. They started steroid treatment immediately to prevent swelling, and suctioned her frequently. Oxygen stats dropped a lot the first 24 hours, but she was able to return home the next day.

She has done great since , and the surgery was a success. She has no snoring and no apnea now and we feel blessed to have conquered another hurdle in our journey. Will return to ENT in November to have hearing checked again, and discuss hearing aids.

Hope this will help anyone who is having issues with apnea or other airway problems. Will be glad to answer any questions.

Aunt T