On the day that you find out you are going to be a grandparent, your world changes. Many thoughts start going through your head. “Is it a boy or girl?” “Is my child ready for to be a parent?” “I’m not old enough to be a grandparent!” “Who can I share this news with?” and “What am I going to be called?” You start wandering into the baby section of the store for the very first time in many years and are amazed with all the new stuff you need for baby. And you pray. You pray the expectant mommy has an easy pregnancy, and you pray for a healthy baby. That’s how it was when I found out my daughter was pregnant and I was going to be a grandma. Then the phone call came.
“Mom, they said something is wrong, and they said that they need to monitor the baby closer.” My heart sank. In this situation, your mind fills with new thoughts. You want to know exactly what the doctors said, and you try not to get frustrated with the expectant mommy because she doesn’t have your experience to know what questions to ask.
I asked my daughter to write down exactly what they think is wrong when she goes in for her next visit, just so I could look it up. A week later I got her call and she spelled out “s-a- c-r- a-l a-g- e-n- e-s- i-s.” What is this? I had never heard of this. This time my daughter had asked more questions of the doctors and shared more information with me. She explained that there were bones missing in the baby’s back. The baby’s legs didn’t look right.
Over the next few weeks, they wanted her to go to another doctor in another town for a more in-depth ultrasound. I started looking up what “sacral agenesis” meant, and I was horrified by what I found on the Internet. I talked to my friends, and I cried. I cried a lot because I didn’t see a lot of good things on the Internet. I saw that there were babies who didn’t survive birth, I saw adults with no legs, I saw adults and children in wheelchairs. I was so scared because I was completely unfamiliar with all of this, and I could not see anything good coming from this disability.
I went with my daughter to her appointment at the other hospital, and we started getting some hopeful news. The baby had legs; they were small and didn’t seem to be moving, but they were there. The baby looked to be missing a few vertebrae, but they couldn’t tell us how many. We learned that the fewer vertebrae missing, the less the other structures in the body are affected. We celebrated with every vertebrae counted. We found out that people with this disability can
live very full lives.We learned that the baby is a girl, and we became very excited.
Unfortunately, the baby’s daddy couldn’t handle the situation. That left the expectant mommy (my daughter) with no place to live. I rearranged my 745-square-foot apartment to make some room for my daughter and her baby. The next few months were filled with plans, back-up plans, doctors’ appointments, and giving lots of words of encouragement to my daughter.
My own parents drove my daughter to and from appointments in town, and I took off work to drive her to the appointments that were 1.5 hours away. I served as back-up to drop her off or pick her up from in-town appointments, and my parents did back-up duty to take her to the out-of-town appointments. Working as a team, our family did what needed to be done.
My daughter was hospitalized eight times, six times at the in-town location and twice at the location 1.5 hours away. The hospitalizations were all for the purpose of monitoring her blood sugars or for monitoring the baby’s movement. The doctors kept telling her that her baby was this way because of her diabetes. One doctor even told her that if she didn’t get her sugars under control that her baby was going to die, and it would be her fault! That doctor got a scolding from me and was taught a little better way to approach a scared mom who is going to have a disabled baby.
The doctor was told to get her facts straight because it is not confirmed by anyone that diabetes is a direct cause of this disability. Many babies with sacral agenesis are born to moms who do not have and have never had diabetes.
We started making plans for baby to be born prematurely because we were told this is normal for babies in this condition for many reasons. My job was to be on standby, so I planned to take emergency time off of work. My friends, without my knowledge, had a meeting and made plans to jump in for whatever we might need, from gas money to food brought to the house. They even supplied a month’s worth of diapers at the baby shower. I had priced diapers and had a panic attack over the sticker price, so the help of my friends was a great relief.
We found a group of supportive people online, the International Sacral Agenesis/Caudal Regression Association (iSACRA). This was a group of people who understand our frustrations and people who also are going through or had been through what we were facing. We connected with people who are adults with this condition They offered tons of insight and support. These people understood things others just wouldn’t understand, and finding them was such a huge blessing.
Being able to chat with other parents and grandparents and even gain the perspectives of adults who live with this disability was priceless. We were able to understand more of what we may need and more about what we should be prepared for when the baby arrived.
On the eighth time my daughter was kept for observation locally, they decided to transport her to the hospital 1.5 miles away for closer observation. My daughter told me to stay home, that she’d be fine, and I could come over the next day to pick her up. Instead I got a call early the next morning that we were having a baby. I jumped in the car with my prepacked bag and started making phone calls as I drove to the hospital. My daughter’s dad, sister, and stepmom made it in from Texas, I made it to the hospital, and everyone else waited for word that the baby was here.
There were two teams of doctors, one for a C-section for my daughter and one for the baby. No one really knew exactly what would be wrong except for what the previous ultrasounds had shown. The hospital we were at was also a teaching hospital, and because sacral agenesis is rare, all hands were on deck to make the best decisions for baby’s care.
I will never forget the first cry. The baby was in another room with her team of doctors, and we had no idea about the details of her condition, but she was alive. My daughter and I both cried. That night, my daughter could not be kept from the NICU, so I wheeled her up after we convinced the nurses she wouldn’t overdo it. She needed to see her daughter. This little baby was perfect. In our eyes, there was nothing wrong with her.
A week later, her main doctor who kept up with all the other doctors started at the baby’s head and listed every single thing wrong with her all the way down to her clubfeet. He then asked what our plans were. What a strange question! He asked, “So, now that you know everything, what are your plans?” I looked at my daughter, confused, and my daughter looked at me. We both were so lost as to why that would even be a question. I spoke up and told the doctor that we had a wall of diapers, tons of clothes, a basinet, and a car seat. We had a pediatrician, heart doctor, and neurologist, and Shriners was on stand by for scheduling her first visits. We also had in-home therapists for OT and PT ready to come out and meet our newest addition and start whatever she may need. Then I said, “So, doctor, we really don’t understand what you mean by asking us what are our plans. We have a baby and are ready to take her home so we can learn what our new normal is!”
The doctor laughed and said this baby couldn’t have come into a better family! So, the next day, we came home from the hospital, and our world switched from mommy’s doctor appointments to baby’s doctor appointments. As the weeks and months went on, we adjusted to having a baby in our house and our new way of life.
Two years later, we look back on these early experiences and realize that we have come so far. Mommy and baby have moved out of my tiny home; my daughter has gotten married. A new grandchild is on the way.
There is nothing I would change about this experience. My granddaughter is the most amazing, strong, independent person I’ve ever met. She doesn’t let anything stand in her way and has defeated so many odds already. She gets around the house on her own, she has had her first surgery, and she has not let casts or braces keep her down. I walked in the living room the other day, and she was on the coffee table, just like a normal 2-year-old! But I didn’t get mad because this was the baby that wasn’t even supposed to be able to hold her head up! She has the best, most contagious smile, and everyone who meets her smiles and wants to know more. We are very open and never hide the fact she has sacral agenesis as we help raise awareness in our community.
My advice, if you are going to have a baby in your family with this condition, is not to listen to a doctor who says the baby will never be able to do something. Each person with this condition is different, and with individual determination, there are really no limits as to what your child can accomplish. We now know that individuals with sacral agenesis do everything from swimming to riding horses to entering competition races. Don’t let doctors tell you that your baby will not even do simple things such as sitting up or getting in and out of a bed. Let your baby guide you. Trust me, your child will tell you what she or her can do.
Words of advice from my daughter are, “If someone doesn’t want to be in the child’s life, don’t force it. Your child is strong and needs strong people around. Also, its okay to break down when you’re alone. You can’t and won’t always be that strong person, so don’t be scared of letting someone who wants to be there step in when you are having a hard time.”
Good doctors, family, friends, and a good support network are the most important things that someone who is a parent facing this path needs. The sky is the limit for anyone who has sacral agenesis as long as they have a good cheering squad at their side.