Like most parents, my husband and I eagerly awaited the birth of our 5th child. In fact, I was more than ready for her appearance, as she was already 2 weeks late. Maybe she already knew how rough those first few months were going to be and had made a conscious vote to remain safely within those ever increasing snug confines of her first home. Nevertheless, the vote was against her, as her doctor, her dad and myself decided hat we could wait no longer and forced the issue.
Fate, with it's timing and sense of humor, forestalled her birth just long enough for her to be born right after midnight--Friday, the thirteenth. The birthing room was full, not only with the attending doctor and nurses; but also with my husband and a couple of my best friends who wanted to witness the birth. Finally, Meghann made her appearance. The top of her head appeared followed by the two biggest cheeks ever born on a child. My friends said she looked like a chipmunk who was harboring all their nuts. The Doctor lifted her out, cleared out her mouth, while Meghann yelled at all of the indignities! The Doctor them placed her on my tummy where Meghann turned a
frightening purple. The Doctor picked her up suctioned her mouth, she pinked up, they put her back on my tummy where again she immediately turned purple. My friends
immediately vacated the room, the doctor quickly cut the cord and raced the baby out of the room followed by my husband and all but one nurse and myself. It was obvious that all things were not as they should be.
I was almost afraid to breath or think, to do so would mean that the world would have to go on and it might just mean that I would have to do so without my daughter. Finally the Doctor returned, Meghann was stabilized but they didn't know exactly what was going on. They wheeled me into the tiny unit that served as their nicu so that I could see for myself that she was all right and then wheeled me to my room so that I could rest.
Rest, easy for them to say. I was back up at 3am and quietly padded back to the unit to see my daughter. The nurses allowed me to hold her and rock her while funneling oxygen through a tube into her face. She had wires and tubes everywhere and had to be kept nearly prone while I rocked her which took some maneuvering. They told me she was doing fine and that many pediatricians had already been in to discuss her condition. I later found out that all 7 pediatricians from the area had been in to see her. Less than 1 day old and already a VIP. I also found out her height and weight for the first time. Earlier it hadn't seem to important. She was 10lbs 13 ounces
and 22 inches long.
Later that morning, her pediatrician came in and said that they thought that she had a condition called Pierre Robin Syndrome. He said he really didn't know much about it but that one of the things he had heard of them doing in these cases was suturing the tongue to a button on her lip; however Meghann's tongue was very very small and he was unsure how they could do this for her. He admitted that the hospital wasn't really set up for condition and that they were planning on sending her down to a hospital that was better equipped for her needs.
She was having breathing difficulties and was receiving oxygen, due to her condition and also due to the fact that her lungs were wet and she had possibly inhaled some meconium during the birth process. She was also hard to feed. When they gavaged her, she gagged and milk would come out of her mouth and her nose. None of the nipples/bottles that they used on her seem to work and by the second day they had inserted a Nasogastric tube which was firmly taped onto her tiny face.
I spent the next few days, learning how to take care of her. They also discussed
the possibility of placing a g-tube in for feeding due to the long term possibility of tube feeding. I really began to think of this as an option due to the fact that she was already trying to rip the ng tube off her face. According to them, if we went ahead with the placement of the g-tube it would probably happen in a month....wrong.
On her 6 day, I get a call from the hospital, they have had a cancellation and if I
can get to the hospital within 30 minutes to sign papers they will put the g-tube in today. As I drove 50 miles an hour in a 30 mile an hour zone to get to the hospital, tears streaming down my face all I could think of was this the best thing I can do for my child. My husband was 2 hours away and at work and would not be able to be with me during the wait. Five hours later she was back from recovery, and very drowsy. They had had such a hard time putting in an IV that she looked like a pin cushion. I counted 19 separate holes just in her forehead, there were many many more everywhere else. All I could think of is what had I put my child through and would it be worth it in the end.
It was in the long run. Although at first her growth rate was slow at the beginning
she was never a failure to thrive infant which often befalls PRS babies. Her breathing got better and by the 6 month I didn't have to worry as much, although she slept in our room 6 inches from me until she was 8 months old; and we used an infant room monitor until she was 1 1/2 years old. Of course I don't think I slept the first 3 months, I dosed with one hand in the bassinet and my body half in and half out of bed, but we survived.
She had her palate repaired at 1 year and was furious that they put the oxymeter on her toe. She had just learned how to walk 3 days before surgery. She pulled out the IV and no one wanted to put it back in as she is still a royal pain in the IV department.
She has had numerous sets of tubes put in her ears. When she was 2 years
old she had her tonsils removed due to sleep apnea. Her little chest labored so hard to draw air into her lungs it looked like her tummy was touching her backbone. Of course true to form, she had to do it the hard way and aspirated blood and an overnight stay turned into a 5 day picu stay.
In the middle of all this we discovered that she had Juvenile Rheumatoid Arthritis.
I believe looking back that she may have had JRA as early as during her first year of birth as there were times when she would cry out for no apparent reason during a
diaper change and other strange times. The type of JRA that she has also requires that she undergoes an opthomological procedure called slip lamp exam, where they check for inflammation of the iris. If not caught, a worse case scenario would end up to be the removal of her eyes, but also leaves her open for cataracts, nether option is very good so she is seen every six months, more often if her iritis becomes active.
At 9 years of age, Meghann underwent an adenoidectomy again due to obstructive sleep disorder (sleep apnea) Her labored breathing at night was causing her to strain her heart putting her at risk of pulmonary hypertension a condition that can affect the quality of life. At 9 years of age, she is still extremely hard to intubate so this is a constant concern when she undergoes anytime of surgery.
Meghann began speech therapy at 2 years of age with a private provider which was covered by insurance. When she reached 3 years of age her speech therapy was undertaken by the school system. Currently in 6th grade she still receives some speech therapy, mostly working on articulation problems. Although her speech is completely understandable there is some distortions, these may be due to some cleft issues or it may be due to her jaw.
Meghann is among that percentage of children whose jaw do not seem to grow out. If you look at a profile of Meghann it appears to be a diagonal line from her chin to mid throat. Her teeth are crowded both upper and lower so orthodontics and probable jaw surgery will be awaiting her.
I can assure you that it will get easier, but it may not always be easy. There will be laughter, tears, trepidation, and times of pure fear. But then again all children seem to do that to parents. Meghann is now 12 years old. She is a Junior Higher. She has been a cheerleader for 5 years in pop Warner football. She is a conflict manager, a position bestowed upon her by her peers and the blessing of her teachers. She just received Cougar of the month for math in the 6th grade and is an honor roll student. What more can I say but Meghann is Meghann.
Sharon
Living with Meghann by Meghann's older sister Robyn.
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