Transcription of video: Jacob’s Story

If you are listening to this, then you probably recently heard the three words called “caudal regression syndrome” or “sacral agenesis.” You’re probably feeling very scared and very alone. You may even feel like your entire world has been turned upside down, but I’m here to assure you that you’re not alone, and I want to share with you the first time that I heard the diagnosis called caudal regression syndrome.

In May 2015, my husband I gave birth to a healthy baby girl. We really wanted to expand our family and found out that I was pregnant again around Easter 2016. Around week 19, the baby started moving, and the following week, we went in for our 20-week ultrasound. The ultrasound tech went through some of the things with the baby and then said that she was going to go get the doctor and be back. I found this strange since I never had a doctor come into our ultrasound appointment before, but this was a new OB-GYN so I thought, “Well, maybe that’s how he does things here.” But when he came in and I saw the look on his face, I knew that what he was about to tell us was going to change our lives forever.

He said that the baby’s legs weren’t moving and that they seemed to be in a fixed position. He got us in immediately with the hospital where I would be delivering, and it would be later confirmed that our son had caudal regression syndrome and that he was on the severe side of the condition. The first feeling that I had after the diagnosis was I was just in shock, and I felt just a lot of grief I was mourning the loss of his legs and I was mourning all the things that I had hoped he would be able to do as a boy and as a man. And I felt lots of guilt. I felt as though it was somehow my fault, and since I was his mother, I should have been able to protect him and that since I didn’t protect him from this that I had failed. I carried that around and it was really, really hard, but then my husband came in one day and said I just read this letter from a 14-year-old girl that has the condition, and I think that you should read it.

So I sat down and read this letter, and it was just absolutely amazing. For the first time, I started thinking, “You know, things could be okay, like not even just okay but better than okay; he can actually have an amazing life even though he has this condition.” So I joined the Facebook support group. It’s a private support group, and it’s not just nationwide, but it’s actually worldwide, and now there’s over a thousand members on it. And when I joined, I was welcomed by none other than Jessica Rogers, who was the 14-year-old girl that wrote that letter, but she actually now was a college student as well as a Paralympic athlete, and she welcomed me into the group. And then everybody else on there welcomed me as well, and it was just absolutely amazing and overwhelming because I realized that we weren’t alone. And I got to see everybody else’s kids on there and realize just like what an amazing life he can have.

And, you know, through this, I was also able to let go of the of the sadness and of the guilt. Through this, I realized that like how I felt about him was how he was going to feel about himself, and I just want him to be happy and love himself, so therefore I’m happy and love him. So, that’s what I was able to let all that go through the support of them.

The pregnancy was still pretty difficult because since he was on the severe side, they thought his spine ended pretty high, and they weren’t sure if he was going to be able to breathe on his own. So, you know, it was really difficult, but I just kept thinking that God wouldn’t make a child this special to not have him in this world, and I just kind of counted on that. And I also relied on the support from, you know, the Facebook group and family, friends, and our local church and, you know, through that we got through it, and on November 29th, our son Jacob was born.

Jacob is now 13 months old, and he is just a happy, healthy, amazing little boy with big blue eyes, and he loves to smile, and he loves to goof off, and he loves to make people laugh, and he doesn’t know that he’s any different. And he’s sitting up on his own, and he’s crawling, like army crawling, all over the place. He has a wonderful team of doctors ,and he is a part of ”Help Me Grow,” which is a great program that’s been wonderful for him. And there’s no doubt in my mind that he has an amazing future.

He can do whatever he wants to do. This condition isn’t going to hold him back; he can go to school, he can play sports, he can become a Paralympic athlete, you know, if he has the drive to do that. He can go to college, he can get a job, he can get married and start a family if he wants. It’s just all up to him, and it’s all up to the support system that he’s going to have.

So, my advice to you upon receiving this diagnosis is first and foremost, if you’re pregnant, don’t give up on your child because they haven’t given up on you. And the second piece of advice is find your support system and join our Facebook group.  It is a wonderful place to find information and support and get a good team of doctors too. The Facebook group can help you with that.

So that’s all, and with that being said, I’d like you to meet somebody. This is Jacob.  Hey, this is everybody. Okay, okay, can we wave “bye bye.” Bye bye!