Posted in Pregnancy & Childbirth, Special Needs Children

Prepping for fetal surgery and long term care

I found out August 6th my 3rd son is due December 20th but my recent ultrasound that day I was told that there were abnormalities of the heart,cleft feet,and Spinal Bifida and I'm now 6 months pregnant. Therefore I had a procedure performed where a sample of my amniotic fluid was taken for testing.......I am waiting for the test results in the next 7 days so schedules can be made for Pasadena's MRI EXAM for the heart viewing and LOS ANGELES for the fetal surgery of baby back correction while still in the womb! This is my first real surgery and I'm nervous and scared about all of it and I'm still choosing to keep him and save his life. I need to know if there are any resources I can work with to help manage any issues he'll have in the long run and same for myself. I have 2 sons already and my first 7 year old has autism and he's working with all the resources for him and its helping. My 2 year old is doing very well! Is there anyone themselves and/or parents out there that have kids living with these conditions who know how to manage everything? Please let know anything that can help!

  • Vicki
    Aug 15

    My heart is with you. I don’t have any experience with these issues but I am sure this is a stressful and scary time. I hope you have great doctors and family and friends supporting you through this. Make sure you’re asking your doctors for help and resources. You already sound like a warrior, so you’ve got this! Keep taking care of yourself so you can keep taking care of those kiddos. I don’t know what insurance you have but in San Diego, the Scripps hospital system and Rady Children’s are the best. I would definitely reach out to Rady’s about the potential issues with your son. 💗

  • E
    Aug 15

    The birth to 3 program that is prior to early intervention or school age support should be able to start right away. The hospital/ clinic social worker could help you get in touch. You also can do the self referral. Each state calls their programs something slightly different. The local public schools should also be able to give you their information. It’s free. Typically with birth to three the therapist and early childhood specialists come right to the house.

  • Anne
    Sep 19

    My son has a congenital heart defect, we currently have therapists that come to the house, some insurances can provide nursing services as well, typically the children’s hospital or wherever your child is being treated will give you information about services that are available. My son is 6 months old and has had two open heart surgeries so far. I chose to stay at home with him but I feel like I have so much help with all the services he is eligible for. Hope this helps! Well wishes to you and your family!