Posted by dr sundeep on .
My 18 months old only daughter is having Down Syndrom with Cynotic Heart Disease with Bilateral catarct With Bilateral Deafness.Since her birth I have got severre depression.I am unable to accept tye fact of life.The words that people are saying that our baby is mantally reatarded hurt me when ever i think about her.i love her very much.i have to decide about her heart operation but i think if I go for her heart operation I will give her a dependent life with impared vision & hearing problem.i have already got her eyes operated.She will require two more surgery for her eyes one for IOL.& second eye surgery for squint. Her vision will be limited.She is using hearing aid machine.How should i over come this trauma & accept the fact of life.Should i go for her heart operation
My number three daughter was born with congenial heart defects. At birth, the seven doctors attending (they thought she had two separate hearts before birth), asked me if we wanted them to do anything (like feed the baby), as it was probable she would die within two or three days.
No parent is prepared for this type of decision. It was agonizing, and wrenching.
In her case, we opted for treatment, and it has been successful, after much hospital work, and open heart surgeries, albeit she is 100 percent dependent on her pacemaker, for life, probably. She is now 27 and a practicing pediatrician. One never knows what life will bring.
In your case, here is what I can suggest. Find a support group locally. Ask your doctor's office if they have a telephone number. Or call a local public school, and speak to the counselor and ask them if they know of a support group, or can they get a parent of a down syndrome child to contact you.
I agonize with you. I can not advise you on the heart situation...is is much like what I went thru. I listened to the Lord, and trusted him. No one can make the decision except you, and you have little basis to go on. We will never be certain what lies in the future, or how what we do or don't do will affect the future.
Get in touch with a local Down's Syndrome support group quickly, or a parent who has already been through similar situations. Often we agonize and labor over decisions and choices that many of our ancestors and friends have already suffered thru. Find and use their experiences.
May God continue to bless your life.
I know it must be hard for you, but you've got to accept it and move on. Just becuase she is sick doesn't mean she's not your daughter and you can't love her. spend time with her and just enjoy her company.