The Child's First Year
From my own experience
I found the first year always to be the hardest. Every mother-to-be, expects their child to be perfect in all ways. When we are told the news from the doctor, it is devastating for every mother and father. You are so busy trying to get through to yourself that your baby is going to be born with a disorder. If there was nothing noticed on the ultrasounds and you were not aware until birth, then it can be even more of a shock. When my little Christopher was due to be delivered via caesarian section, I was expecting this "perfect" adorable bundle of joy to be in my arms.
Once the pediatrician noticed Christopher's extremely bent foot and severely receding chin, he requested there be some chromosomal tests taken from his father and myself. I was not acknowledging the fact that he had something wrong until
Christopher's first birthday came along.
Understanding and acknowledging something like this is very hard to deal with. If you feel that you did something wrong or you did not eat the right food etc during the pregnancy, then please stop feeling that way.
Most chromosomal disorders happen for unknown reasons and there is nothing we could have done to prevent them. I personally feel that each and every person was put on the planet to do something special. If God has chosen me to be the parent of a baby with a disorder then I see it as an honor. To me that is saying, he feels we have the gift of parenting such a lovely and special human being. Everybody of course feels differently about this, though that is how I see my Christopher.
With the medical side of things in the first year, it can be very confusing and you may very well be bombarded with information. The doctors know so little that much of the time you are given the worse scenario about his/her future life. Much of the time I recommend to not take everything said that seriously, as every family I have spoken to was told the worse and the child is still with them today.
Problems You May Confront
One very common situation you may be confronted with is troubles feeding you baby. Whether you choose to breastfeed or bottle feed your baby, there is a very good chance that you will have problems. Low muscle tone is one of the most common traits that accompany Trisomy 9p. When babies are trying to suckle on the teat, they use up so much energy to have a short feed. Because of this the babies tire themselves out before they have drunk sufficient. Many times when infants are first born, doctors have recommended to give half of the milk via an NG tube (Nasal Gastric tube). This allows the baby to reserve energy for having the other half of their feed. The time it takes for baby to come of the NG tube varies from baby to baby. I had trouble breastfeeding Christopher right through his first seven months. Even after having assistance from a speech therapist, he was still only having very small feeds. Unfortunately little was known about the disorder and they knew nothing that would assist me. Fortunately now, there is a book called Breastfeeding your Baby with Downs Syndrome, that has been made by the Nursing Mothers Association of Australia (NMAA). This book was printed up particularly for Downs Syndrome babies as they have low muscle tone too. Trisomy 9p is very similar to Downs Syndrome and the breastfeeding problem is a common ground for both disorders. be a very valuable resource if you have the desire to breastfeed. If you are interested in obtaining the book then go to the NMAA web page at
I personally recommend it, and wish that I knew of it's existence when I was breastfeeding.
When you feed your baby, you may notice he or she is coughing and choking regularly while drinking. Many of the children have trouble swallowing and need to have their drinks thickened. If you notice this occurring I strongly recommend you see a speech therapist as soon as possible, whilst pointing out the swallowing difficulties our babies have. Still at 6, my Christopher has to eat a certain diet as he chokes on food too.
Other problems you may confront is constipation, ear infections and general low muscle tone. With the low muscle tone many babies are still only rolling at 12 months and do not walk until approximately 3/4 years old. I personally found that to be an eye opener for me. When I saw many other babies now walking and Christopher not even sitting up, it really made me wake up and acknowledge his disability. Do not be worried when your baby is still in new born clothing at six months of age. It is very common for the babies to take at least six months before starting to grow. My Christopher didn't grow much up to 7 months then he suddenly shot up and caught up with children of his age.
Another common issue is ear infections and continuous conjunctivitis. Be very cautious as much of the time there is an underlying issue that causes all these problems. My Christopher was found to have nasal asthma which is hard to detect as the child does not wheeze during the day when your visiting the doctor. The wheezing also can sound more of a cough then a wheeze too. A wonderful pediatrician diagnosed Chris and ever since has been regularly on a nebuliser he has not had any infections unless he has a severe cold.
I hope this information has helped you get off with a better start then what I and many other parents have. Please do not hesitate to ask any questions. I will be more then happy to help you as much as possible.
All information is not professional and should not be taken as medical information. While all care has been taken the information contained is not written by a medical professional and as such should not replace the valuable and personal information of your own health care professionals.