I am 24 weeks pregnant and just found out my daughter has ACC with 2 heart defects. It is so hard to take everything in when you find out your unborn child could live with serious health problems. I just need some advice and info if anyone could help. Thanks
My son was diagnosed with acc at a very young age. My biggest regret was not having early behavior intervention. He will be 15 this June. He weighs almost 200lbs and is now 5 feet 10 inches. He is a big boy and his behavior is very violent and explosive. Most children with acc have varying symptoms. Mine has been also diagnosed with mild mental retardation, his speech is very unintelligible, at a level of a 3-4 year old and his social skills are not up to par. My advice is to make sure to include behavior therapy as early as possible and also with speech therapy. Any help you can get along the way as issues arise is also a must. Like I said, it’s hard to say what difficulties you will face as all children with acc will have different needs.
You have the added heart defects which will mean many trips to the hospital and probably more health issues than average. Keep your head up and get your family involved. You will need all the support you can get. It’s important for everyone to know that you are embarking on a journey that will test you in every possible way and having someone there to help along the way will help you immensely. Remember, that no matter what, no one will love your child and appreciate the beautiful and caring side of them like you. Be strong and you will be rewarded by some amazing moments, laughs and tears.
Each child with ACC is different. My son Noah has complete ACC and hypotonia (weak muscle tone). He is delayed about 3 years in all areas but progressing. He is a sweet loving child who loves everyone around him. Noah amazes me at every turn. He is not the child I dreamed of but he is the child that I love. Girls with ACC can be different than boys so make sure you have talked to a genesist and a neurologist after your baby is born. You will love you baby and she will be the love of your life. There will be hard moments but there will be laughter. HUGS.
Have you looked at the NODCC website? This is a great source of information and can help you understand what some obstacles are for our kids. Like Autism or Down syndrome, this diagnosis has a wide range of ability and disability. Also, there are related health factors like mid-line birth defects, chromosome amoralities and seizures. The more testing and understanding you can get at the very beginning, the better informed you will be for the best path in treatments, therapies and home care. Like another post mentioned, early intervention is very important - we started at 4 months old and feel blessed to have been able to receive therapy early on. All of this information and the doctors visits as well as trying to explain things to co-workers and family members is very overwhelming. Take time and enjoy your pregnancy and your baby. Celebrate all the little moments as you would have otherwise. Do the baby shower and take the pictures. All along the way, we have had to find our own joy in each little step - start early!