Here's her story...
I have always had this nervous, anxious, excited feeling when it is ultrasound time. It is the first time to see our baby- the little eyes, nose and mouth -the fingers and toes. I can hardly wait to find out if it will be a boy or a girl. But of course, I’m always nervous that the ultrasound will show something that is unusual. With my first two pregnancies, I had those same feelings. Fortunately, their little bodies were perfect. This time, I was on my third pregnancy and I felt like I didn’t need to worry anymore, that those feelings of something being wrong weren’t necessary.
The Ultra Sound
My husband and I scheduled our appointment early that morning so we could wake the girls when we returned from the ultrasound and share with them the good news. I remember sitting in the chair as they did the ultrasound. Already, this ultrasound was different than my previous two. Two ultra sound techs were present. The one was a rookie, and the other tech was there to observe her work. Immediately, this ultrasound seemed longer than the others and somewhat tedious. It began taking so long- I wanted to just ask “Is everything okay? Are you finding everything you need?” But I figured she was just new so it was taking longer.
Once the ultrasound was complete and she had entered the necessary data, the tech pointed to the anatomy- we were having our first boy! We were so excited for this news!! Our first boy! I remember walking out of there and being so happy. We went home and woke our girls up and told them they were going to have a brother. They were so excited!
The phone call
A few hours later I got a call from my OB. I wasn’t able to answer my phone so he left me a message to call him. With my other two previous pregnancies, usually the doctor didn’t call me for a few days so I knew at that moment something must be wrong. My husband was very positive and said maybe he just was able to look earlier at the results this time because we scheduled our appointment so early. I was hoping that this was the case. The doctor explained that the ultrasound indicated that there may be some abnormalities. They thought my son might have Spina Bifida. He wanted us to go see a specialist tomorrow morning to get a confirmation.
Thinking about the first ultrasound, I had some hope that it was wrong because the girl was new and just maybe she had taken the image incorrectly. I read all about what Spina Bifida was that night. I had heard of it, but I really didn’t know what it was. As I started reading all the things that might happen to our little boy, my eyes filled with tears. We went to the specialist and had some more ultrasounds done. It was confirmed that he did indeed have Spina Bifida. The doctor sat with us in a room and reviewed some medical books and other information with us. It was such an overwhelming feeling, so much information- pages and pages filled with things that may affect our son’s body.
At first, all I could think of was why me, why do I have to go through this? And then, my thoughts turned to my family. Will I be able to be a good mom to a baby with special needs? Will I be able to still be a good mom to all my children? Will I be able to provide them all the individual time and attention that they each would need? How will this affect our other kids? Will they be mad at their brother because sometimes they might have to miss out on things? And my thoughts turned to my husband. How was he dealing with all this? Would he blame me? Would he blame himself? Would he be able to help me raise this child? The next couple of days were so hard. It was so hard to not cry every time I thought about our son. It was hard not to cry every time we told somebody. I remember thinking, “is this what it’s going to be like forever? Will I always have these thoughts of sadness?” I felt like there was this big dark black cloud weighing down on me ALL OF THE TIME. It felt as though all the happiness had been sucked out of me and all that was left was fear, doubt, and sadness. I was so worried that I would feel like this forever. I hated that feeling. I wanted it to go away more than anything. I just wanted to feel happy again. After about two weeks of feeling this way, things really started to change. I think the shock of everything had worn off and the weight of it all was passing.
We had been told about a surgery that they do for babies with Spina Bifida. The procedure entailed surgery on me to get access to the baby. At which point, they would repair the baby’s spine while he was still inside of me. It’s a difficult procedure for both the mother and the baby. They have to perform the procedure before 26 weeks so we were on a time crunch if we were going to do it. I had to have some tests done to make sure we qualified for the surgery. And finally some good news- we qualified! We started to put a plan in motion. There was so much to consider… so many details. There are only 4 hospitals in the US that perform this kind of surgery. Luckily, we were close to California so we started to make plans to go there. However, I would have to leave our two young daughters for at least 2 weeks for the surgery in California. After the surgery, I would be on bed rest until the baby came. The effects of the surgery would most likely result in the baby coming early. Most babies that have had this fetal surgery were delivered at 32-34 weeks. So, I would be on bed rest up In Salt Lake City, four hours away from my home until the baby was born. And then, we would have to wait to take our baby home when he was fully recovered. So, I could possibly be away from my home for 3-4 months!!
A Change of Plans
I felt like things were working out and then our plans began to unravel. We were now going to have to go to Texas and have the surgery. Thankfully, we had some family down there that we could stay with which made things easier. The hospital in Texas told us that they would do the surgery but that I wouldn’t be able to come home until after the baby was born. This was going to be most difficult. This would mean for 3-4 months away from my husband and daughters? Who would take care of my daughters? So much doubt started to fill my mind. I had felt so certain, but now doubts began to fill my mind. With all the doubt, I kept planning for this trip. I kept telling myself I was just worried about my kids I was just being a “mom” and didn’t want to leave them. Part of that was true, I didn’t want to leave them. I haven’t ever really been away from them. Part of me didn’t want to do this surgery. I didn’t want to have to go through everything they were going to do to me. But, the other part of me would do anything for our son in order for him to have the chance at a normal life. I would ask my husband daily, “do you still feel good about doing this surgery.” He would always reply, “Yes, everything will be okay.” His faith always comforted me and made me feel like we were doing the right thing. However, just days before we were leaving, I had a total emotional breakdown.
I just didn’t think I could go through with it. I didn’t think I could leave our daughters. I was so worried about them and plain and simple, I just didn’t have a good feeling I asked my husband to give me a Priesthood blessing that night to help me calm down. After the blessing, I felt peace come over me. I felt like everything was going to be okay. We were leaving in few days and I felt like I was able to get everything done that I needed to do and get ready to go. The night before we were leaving, a bad feeling came over me. I told my husband that I just couldn’t go. I felt like I was choosing between our children. I felt like if I did the surgery, I was choosing our son over our daughters and if I didn’t do the surgery, I was choosing our girls over our son. How could I make a choice like this? I was so worried that I was going to make the wrong decision. My husband and I knelt down together and said a prayer. We both felt like we shouldn’t go through with this surgery.
For two hours we sat and talked and cried trying to figure out what we should do. While I was always the one with doubts about the surgery, now my husband felt like me. We were both having doubts. He didn’t feel surgery was the best choice either. I just kept asking him, “are you sure, are you SURE?” I must have driven him crazy. Gratefully, my husband is truly amazing and I couldn’t have gotten through this alone. He was always there comforting me when I needed it and helped us make the right and best decision for everyone in our family. After finally deciding not to go do the surgery, we went to sleep. I woke up the next morning expecting to feel differently, that perhaps maybe I had just needed a good cry. But for the first time in four weeks, I finally felt at peace! Peace for our son. I knew that he was going to be fine and that Heavenly Father had a plan for him. And maybe I didn’t fully understand that plan. But Heavenly Father knew what was best for him and for whatever reason we weren’t supposed to do that surgery.
I began to understand… sometimes when a trial comes you first think, “how do I fix this? How do I change it?” But sometimes I don’t think that’s Heavenly Fathers plan. We are not meant to fix or change things but to learn to adapt and accept things.
Here he Comes
A few months later, I had to leave my husband and our 3 year old daughter. I went to stay with my mother -in law with our one year old daughter until the baby came. The doctors wanted me close in case the baby came early. This was hard to be away from my husband and daughter for 2 ½ weeks but the time went fast. My mother-in- law was great. She always had something for us to do to keep us busy.
The night we went into the hospital, I was so nervous. I had only met with my doctor two times. I was delivering in a place that was unfamiliar, and the doctor was going to induce labor which made me so nervous! Fortunately, I did not have to have a c-section. However, the labor was very hard on my body. It was by far the most painful thing I have ever been through. I asked my husband to give me a blessing while I was in labor because I was in so much pain and just really needed this baby to come out. He gave me a blessing and he since then has told me that, that was the most powerful blessing he had ever given. He said he could just feel the power of the priesthood in his hands as they were laid on my head. He said he had never prayed so hard.
Several hours later, our baby boy was born. We named him Carter. Immediately after birth, they took him through a little door in the room to take care of his needs. I didn’t get to even see our son for 4 hours!! Before they transported him to Primary Children’s Hospital, they brought him by my room and I got to look at him and touch his little hands and arms. He was so happy. Because my labor went longer than expected, he couldn’t have his surgery until the next morning. So for 24 hours, I didn’t get hold him. The surgery was three hours long. The procedure involved closing up his back and correcting his spine.
Carter Colt Forsyth
A lot of people ask me if I was nervous while he was in surgery, and honestly I wasn’t ever scared or nervous for him. I knew that this surgery was saving his life and that everything was going to be okay. He did great. Our son is such a fighter and is so strong. He recovered so well. We were able to take him home five days after his birth. He is such a miracle- 90% of Spina Bifida kids have hydrocephalus. This is where the spinal fluid doesn’t flow properly through their bodies and builds up on the brain. If not treated, it will cause death. The whole reason we were going to have the surgery while he was in the womb was to prevent this condition.
Our son has been blessed with not having hydrocephalus. He has some bladder and bowel issues that all kids have, but he will always have. I have to catheterize him twice a day and he is on Mira lax to help him poop (quite normal). He was also born with clubbed feet. We had to cast him for 2 months and then do surgery on his feet to fully correct them. He had to wear braces on his feet day and night for 3 months and now he wears them just at night until he is 4 years old. When he was born, his legs and hips were really tight and he couldn’t make them go flat. We had to do a lot of physical therapy to help his hips get to where they are now. He still has physical therapy about twice a month. Most of this is just to make sure he doesn’t fall behind. He does really well with everything that I have to help him with. Carter’s level is L4 which is really low on the Spina Bifida scale. He is able to feel and move everything but his feet. But despite everything that we went through, I would not change any of it.
Our son is truly amazing! He can do so many things. I know we have been so blessed. We have had so many people praying for us and I have felt those prayers. I have never felt anything like the power of prayer like this before. The only way I can describe it is “It’s like a force around me that was just always there comforting me when I needed to be comforted.” I’m so grateful to all the people that prayed for us and continue to pray for us. I know it’s because of their prayers, Carter has been so blessed. I’m so grateful for my husband. He truly is the reason I was able to get through all of this and continue to get through it daily. We still have a tough road ahead. But during the times when I have just felt so defeated, he was always right there helping me get through it, and he always just knew what to do and say. I love him so much and I know that I can be the mother that I want to be and need to be because I have his love and support. When I look at our son I do not see a birth defect, and I do not think Spina Bifida. All that means to me is-split spine and the limitations that may come with it. Rather, when I look at our son, I see Carter Colt Forsyth. He is limitless. I don’t want our son to be everything I want him to be. I want him to be everything that God has intended him to be.
*To learn more about spina bifida and Carter’s story visit the Forsyth blog at spinabifidadad.blogspot.com