It was the last Friday in May 2015, a 3:30 appointment. I had just finished a teacher in-service day and headed to a level 2 ultrasound, because at 40 year old maternal age, those are standard procedure, I guess. My husband did not attend because with my first daughter, born only the August before, we didn’t learn anything except the gender. We figured there wasn’t much of interest on the blurry ultrasound…
After the ultrasound, the doctor came in and simply stated, “Your baby has hydrocephalus and spina bifida. Do you know what that is?” I had a vague idea of what spina bifida was due to some volunteering I’d done. Insert crude drawing on a white board of hydrocephalus. Then, “In the state of Ohio, you can medically terminate pregnancy up to X# weeks”. In the midst of all this, they talked me into an amniocentesis. That is a very painful procedure.
I called my husband. A friend, whom I had had plans with took a public bus to the hospital to pick me up and drove me home, as I made a few more phone calls.
The following week, the genetics specialist called with the results of the amniocentesis. She also had the same option of “there is still time to medically terminate the pregnancy”. After we declined, she stated that we could get a second opinion.
At the second opinion appointment, at The Ohio State University Maternal Fetal Medicine, genetics spent time with us, I had another ultrasound which verified the diagnosis’ and we were set up with the nurse social worker. From there, we had a meeting at Nationwide Children’s Hospital with a neurosurgeon, a urologist, NICU social work, transport team member, and I don’t remember who else. That meeting prepared us for the first 24 hours but the rest would be determined by Gigi.
During that first month of diagnosis, I had a tension headache, self doubt, and guilt. Yet, I ended my employment at the end of my contract on June 30. So, until October, I was able to spend one-on-one time with my oldest and take small adventures with her. She even went with me to non-stress-tests with me.
At my last ultrasound, the tech welcomed me with “How are YOU? Truly, how are you doing?” Between the end of May to early October, she was the first professional person to offer any sort of emotional support.
Gigi was born via scheduled C-section at OSU Medical Center and she and her Dad were transported to Nationwide Children’s Hospital (NCH) via ambulance. It’s about a 20 minute drive. While at OSU, our pastor baptized her with a syringe of sterile water. During our 39 day NICU stay, there were tests and surgeries. She had 3 surgeries during that time. The social worker offered us forms to complete for Help Me Grow (0-3 early intervention program in Ohio) and social security. The social security representative stated that my husband made to much money to qualify but if we had another child, we would qualify. Um, isn’t that part of the problem?
One of my favorite interactions, while in the NICU, was a doctor that I saw only once. We walked in and simply stated, “what have you read?” I replied, “ I haven’t read that shit. They aren’t talking about my daughter!” He did a fist pump, we talk a few more minutes and I never saw him again until last year. In Gigi’s 4th year of life, that same doctor became the physical medicine doctor over Myelo Clinic! I cried when I saw him again.
Our experience with Help Me Grow/early intervention wasn’t great. The OT assigned to us, didn’t work with Gigi much or gave me ideas and came back in a couple of weeks. Other than that she didn’t have anything planned to work on…just chatted. She was rather upset that I decided, at a year old, to take Gigi to OT/PT at NCH. At the time, we had two insurance (Union insurance and NCH insurance), so it didn’t cost us anything.
When Gigi was about 18 months, I started looking into child care options. I really wanted to get her into an infant classroom so that she could be with typical peers moving at typical speed. By this time, she was rolling but not crawling. Nor was she sitting up independently. Since I worked in child care for 15 years, I knew this would be difficult but I didn’t expect no call backs. No one would help me, even for a short time. So, I tried our local Head Start. I asked about an infant and toddler program. They did not have center-based openings but they had home based opening. I did not know that this was a thing! So, starting around early August of 2017, Gigi received a weekly home visit from a teacher with Early Head Start. She brought activities, had a plan and included Big Sister! I was so excited. Then I find out that she could have started with us at diagnosis time…back in June of 2015. I really could have used the emotional/psychological support then and through the whole process.
When Gigi was 2 ½, we were in the kitchen and she was pointing and grunting to things she wanted. A light bulb went off in my head and I requested a referral to speech therapy, the next time at Myelo Clinic. After a month at speech, she was talking complete sentences and after 6 months, she could say the Pledge of Allegiance but wouldn’t say 5 words for the speech therapist. So, we put an end to speech therapy.
With the thought that Gigi would start PreSchool, the Myelo team ordered Gigi
Upon Gigi’s 3rd birthday, she was transitioned to the public school on an IEP. She only needed OT/PT and thus thrust into the special needs preschool class within our district. I had heard that I wouldn’t like it…and I didn’t. The class was disorganized. At the first year “graduation”, the lead teacher/intervention specialist had asked the children what they wanted to be when they grew up. When she read each one, she openly laughed. I was so upset. Unfortunately, I waited to express my concerns. I tried to have Gigi switched to typical preschool class the following year but there wasn’t room. So, for a second year, she was with the special needs class. While she is physically disabled, she is not cognitively disabled and has an extensive vocabulary! Needless to say, I was not too sad when COVID cut that school year short. I did not want her in the class. In may, we had a ZOOM IEP meeting to document that Gigi would be in the typical class this school year!
Needless to say, Gigi has thrived in the typical class. I have already talked to the intervention specialist for Kindergarten to ensure she has the person that works with the integrated children.
At Myelo Clinic, they tell us that parents know their children best. That parents are the experts. Use that! Ask questions. Search for answers.