“I remember the doctor saying, ‘There’s a problem with your daughter’s left arm.’ They pulled us into a small room and gave us the worst-case scenario with the option to terminate my pregnancy.
On January 25th, 2019, I found out I was expecting by taking a pregnancy test, honestly not expecting the test would come up saying PREGNANT. I felt a rush of emotions, I couldn’t believe it. We were newlyweds. I thought to myself, ‘What are people going to think?’ ‘Are we ready for this?’
After telling my mom and Javier the news, we were so excited to bring a baby into this world. The first few appointments everything went great and seemed to be on track. At every appointment, I would ask the OB how my baby arms there were. I kept having this gut feeling something was wrong, but he kept reassuring everything was okay. I was just a paranoid first-time mom.
All the tests prior had been okay, so we thought we knew everything was okay. Weeks later it was time for our 20-week anatomy scan. We could not wait to find out the gender and make sure everything was okay. That morning, I still couldn’t shake the feeling something was wrong. I was already crying in the waiting room before being called back. All we wanted was a healthy baby with 10 fingers and 10 toes.
The first hour, everything was going so smoothly. They kept saying everything was on track. During that hour, we found out we were expecting a baby girl. After being told, the ultrasound tech got quiet. We could tell something was wrong. The next few minutes, the doctor came in and started checking once again. It got quiet.
The looks on both of their faces just screamed something major was wrong. He said, ‘We can’t find your babies left arm.’ So, he continued to look. All I can remember is him digging into my stomach trying to find it. As he looked, he did find what seemed to be just the top part of her arm and nothing else. I remember crying while looking at my mom and husband, all of us in shock. Heartbroken.
After telling us the news, they took us into this back room to give us more details of what they found. One of the first things they said was, ‘Termination is always an option.’ I looked at my husband and the doctor and said, ‘How could I ever terminate my baby just because she is missing parts of her arm?’ He answered, ‘Babies who are born with these types of problems usually will have other birth defects. However, in some cases, it can be isolated.’
Our hearts just continued to break the longer we sat in that room. All we wanted from that day was to find out the gender of our baby but, instead, we got devastating news. That ride home I cried and cried thinking of the life my baby was going to have, the problems she would have, and the fact that I wasn’t going to have a normal-looking baby. I kept thinking about what I did to cause this. Why us? I asked myself that every day.
So many thoughts just kept running through my mind. Will she have friends? How is her life going to be? Will she ever get married? Will she ever find anyone to love her? These thoughts just took over my mind. I was heartbroken for my unborn child. I never even thought of these things happening, until it happened to us.
When we got home was when my husband had to call his mom and give her the news. Can you imagine having to make that phone call? Once I got home and had time to do some research, I found the ‘The Lucky Fin Project.’ It gave me so much hope to see other kids with limb differences.
Over the next few months, they continued to do anatomy scans. At our next scan, we found out she had some vertebral anomalies as well. With the issues with her arm and back, they wanted to check her kidneys and heart on every scan. We prayed every day these doctors were wrong; she was just laying a wrong way, and her arm was normal. I wanted Mia to prove these doctors wrong so bad.
Each appointment we still never could get answers on what to expect with her arm. They could never get a good look at it. It took me a bit to get excited about my pregnancy again. Our 20-week scan took something from me I didn’t think I’d ever get back. Going to every appointment, they continued to find things wrong with either the baby or me. I didn’t think we were ever going to catch a break.
When it came time to do my glucose test, I was hoping it was something that would go good for us. I had cut out all sodas, took my vitamins, and watched what I ate. I ended up failing my glucose test both times. So, I was diagnosed with gestational diabetes. With everything going on with me and my baby, my water broke at 32 weeks and 6 days. I was in the hospital for four days before Mia came at 33 weeks and 3 days on August 22nd, 2019 weighing 4lbs 1oz.
I had to be transferred to a hospital that had a NICU close; I was so scared none of the nurses and doctors really knew what was going on with Mia and her arm. As I was in labor, I remember crying, telling the nurses and the delivery doctor she was going to have a little arm. They told me a story of another baby she had delivered like her before and he lived a normal life.
When she was born, we were all so anxious about what to expect. She ended up being born with only the top part of her arm with a little hand with two fingers, and she was BEAUTIFUL! Surprisingly, my labor went smoothly with no complications. I pushed for no more than 2 hours. After she was born, we were able to see her for about 10 minutes before she was taken to the NICU.
That night we were able to go and see her. When we got into her room, the nurse told us they were having a hard time passing the feeding tube down her throat; they weren’t sure what was wrong until they could do some x-rays. That next morning, I called the NICU to speak to the nurse to see if there was any news on what was going on. She said, ‘The x-ray shows her esophagus isn’t connected to her stomach, which is called EA/TEF fistula, meaning she is unable to swallow.’
My heart sank. I didn’t even know stuff like this happened. When we heard from the surgeon, he said they would be doing surgery on her when she was 4 days old. I honestly couldn’t even fathom what was happening. As the day of her surgery approached, we were able to be with her until they took her back for her operation and we went to the waiting area.
They called to update us; she had been put to sleep and they were fixing to open her up. A few hours later, we had got no update. We could just feel something wasn’t right. Within the next few minutes, the surgeon came out to talk to us, and we didn’t know what to expect. Once again, we were being taken into another room. We already knew from experience the news couldn’t be good.
He began to tell us they found another birth defect, so they were going to close her up and cut from the other side. The tears again. I thought ‘My poor baby is having to be cut open on both sides of her chest at 4 days old. How could the doctors have missed this?’ A surgery that was only supposed to be around three hours turned into a 7-hour long surgery. We were exhausted mentally and physically.
Seeing our baby cut on both sides of her chest being hooked up to the ventilator was just devastating. Her NICU journey had its ups and downs of course. Mia was eventually diagnosed with something called vacterl association. Mia has four of the letters to be diagnosed; you have to have three or more. With this diagnosis, it’s not very known to doctors. There is no known cause of why this happens. It’s not something picked up genetically.
After finding out all the things she had going on, her little arm didn’t even matter anymore. We just wanted our baby healthy enough to come home. She had trouble eating after her surgery; she had problems aspirating her milk. So, they gave us the option to keep her in the hospital or she would need a feeding tube.
We didn’t even want to think about her needing another surgery because we were scared for her to be put back under and on the ventilator again. But, it seemed to be that’s the only way we would get her home. After 53 days, our sweet Mia was finally coming home with us. In the next few months, she had therapy weekly for feeding and occupational therapy.
Fast forward a few months and she is healthy and thriving at 9 months old. We are blessed to have a wonderful family and an amazing set of doctors looking after her. If I would have known how much this little girl was going to change our lives, I would have had none of the negative thoughts I did. Being a parent to a child with a limb difference has changed the way I see the world for the better.
Mia lets absolutely nothing in her way of doing things; she does everything a normal baby can do, just in different ways. Anyone who reads this with a kid who has a limb difference, please don’t be scared. We take it day by day with her diagnosis. We know she will face challenges in her life because of her little arm, but we know she will overcome them the way she has overcome so much in her short 9 months of life. We want the world to know that different is beautiful. She is the biggest blessing and the most beautiful girl in our lives.”
A child born with a limb difference is not tragic. It’s extremely important to show our children how capable and wonderfully made they are. If we treat them as flawed or limited, that is who they will believe themselves to be, and that would be a tragedy.’ – Molly Stapleton, Founder of Lucky Fin Project
Read more inspiring stories of children with limb difference:
‘What? No hands?’ My Dad was minutes away from picking my husband up. The Universe chose me to be Ivy’s mom.’: Mother learns of daughter’s limb difference, refuses terminating pregnancy because ‘she was ours to love, protect’
‘She was unable to find the baby’s legs. She also couldn’t find the left arm.’ I squeezed my husband’s hand.’: Mom knows daughter with limb difference is in their lives ‘for a reason,’ she is surrounded by ‘love, support’
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