I was 22 when I became pregnant. It was very unplanned and unexpected but I decided that I wanted to keep this baby. God had willed a life inside of me and it was not in my power to decide the outcome. I would be a single mother and that scared me, but I vowed to be the best mother I could possibly be.

I went in for my first prenatal check-up with my obstetrician at 12 weeks and my tummy measured perfectly where it should be. I heard the heartbeat and tears of joy rolled down my face. We calculated a due date of December 9, 2004 based on my last menstrual period.

In July, at 18 weeks, my OB sent me in for a routine level I ultrasound. My mom and I went to the ultrasound together. I already knew that I wanted to find out the sex of the baby if possible. We were so excited that day! The first thing we saw when the tech started the scan were unmistakably girl private parts! My mom asked the tech if that’s what we were seeing and she said yes, I was having a girl! I was so nervous and excited that I shook for the entire exam. It was so fun to see the baby’s profile and to watch her move around when the tech poked at my belly. During that first ultrasound, her overall measurements were about 2 weeks behind in growth than where they should have been. The ultrasound technician assured me that my doctor had probably just miscalculated my due date.

I went back in to see my OB a couple of weeks later and we discussed the ultrasound results, which were somewhat troubling. We discussed my due date, which we felt was correct. He sent me to the perinatal clinic to have a level II ultrasound the next week. During this ultrasound, she was still measuring behind in growth. The due date that the measurements were generating was December 24, 2004. The perintologist wanted me to come in and have another scan done in 4 weeks to check the growth again.

Four weeks later, in August, the ultrasound results were even more troubling. It appeared that she had a cystic mass in her abdomen and the tech couldn’t find her kidneys. Her head was measuring smaller than the rest of her body and it appeared that she had ventriculomegaly, which means that the brain ventricles are dilated with extra cerebrospinal fluid. It felt like someone had kicked me in the stomach. I was so worried that there was something terribly wrong with her.

I can’t even explain the emotions that coursed through my body that day. This pregnancy was such a surprise to me in the beginning, but now I wanted this baby more than life itself. I begged God to please make her okay, I bargained with Him that I would never want another baby if this one could just live and be healthy. I just couldn’t believe that this was happening to me. It was as if I was living in a terrible dream and I couldn’t wake up.

I went back four weeks later to have another scan done and to meet with a perinatologist specializing in genetic disorders. The same problems from the previous ultrasound were present during this scan. The perinatologist recommended that I have another scan done in 4 weeks. By then, the baby would be bigger so we could see more of her organs.

I also met with a genetic counselor that month. He talked to me about the different options I had for testing for chromosomal abnormalities. We discussed amniocentesis, which carried a 1 in 200 risk of miscarriage. At that point, I was 24 weeks pregnant and I knew that if I went into labor, the chances of my baby surviving were extremely slim. He also discussed abortion with me, which was absolutely never an option or a thought in my mind.

In September, I went in to have another ultrasound. My mom came with me, as she had done for every ultrasound thus far. I had an ultrasound done and we were able to see more clearly this time that the cystic mass in the abdomen was actually a section of dilated bowel. The tech told me that this most likely meant that the baby had a bowel obstruction. The tech was also able to find the kidneys this time, but they were extremely small and my amniotic fluid was measuring low. She also mentioned that the baby’s hands were in fists and she wanted her to open them up, but being the stubborn little girl she is, Ruby didn’t open her fists. The head growth had also slowed down even further.

My perinatologist came in after the exam and I could just tell by the look in her eyes that things were not good. She talked to me about the fact that my baby’s hands were in fists (a major marker of genetic syndromes) and that with all the other problems, she thought that my baby had Trisomy 18. I had done research about genetic disorders prior to this and I knew what Trisomy 18 was. I started crying immediately. She explained to us that Trisomy 18 was a genetic condition that was incompatible with life. She said that she highly recommended that I have an amniocentesis that day. I was 26 weeks pregnant and I didn’t want to have the amnio, but I knew that I had to find out what was wrong with my baby.

The doctor left the room to prepare for the amnio and I just crumpled into a ball in my mom’s arms. I couldn’t believe that after all this, my baby might die. The amnio was painful, but mostly it was my heart that hurt. I would have the preliminary results the next day. My mom stayed with me that day and spent the night as well. We did a lot of talking that night. She was so supportive and I know that I couldn’t have made it through that long day and night without her.

I did a lot of thinking and praying that night and I stopped making bargains with God and instead surrendered myself to His power. I knew that whatever was happening to my baby was already done and that God had a plan in mind for her. I had to believe that He knew what was best for her and for me. I began to feel more strength in my heart. From then on, I named my baby Ruby. It was a very special name to me and this baby deserved to be called by her name.

The next day, I received a call from the genetic counselor and he told me that the FISH results had come back normal. FISH tests for Trisomy 13, 18 and Down Syndrome. I would be able to receive more detailed results in 2 weeks that would test for all types of chromosomal deletions, additions, etc. I was so happy that Ruby didn’t have Trisomy 18, but I knew that my troubles were far from over because she still had the physical symptoms that something was very wrong with her.

Two weeks later, I received a call from the genetic counselor. Ruby’s chromosomes were all normal but there was a high level of AFP in the amniotic fluid, which usually indicates that the baby has spina bifida. We knew from my multiple ultrasounds that Ruby didn’t have spina bifida. He said that there is another chemical present that can signal that the baby is very ill or in the process of miscarrying, but he couldn‘t be sure. He told me that a miscarriage was very possible and that I should prepare myself just in case. I couldn’t believe what I was hearing. It seemed as if everything was stacked against my little angel. I felt as if I was the only person who believed that she was going to live. All of the doctors expected her to die.

At 33 weeks, my perinatologist decided that it was time for me to have this baby. Ruby’s section of dilated bowel was getting larger by the day and my doctor was afraid that she may go into distress and get much sicker if she remained in the womb. They began inducing me on November 9 and on November 11, Ruby was born with a room full of doctors and nurses waiting to greet her, along with my sister and my mom. Ruby scored a 9 and a 9 on her 1 and 5 minute Apgars. I was able to hold her for about 5 minutes before they took her away to the NICU. She was so beautiful and I just couldn’t believe that I was finally holding her in my arms! My mom followed her into the NICU and came back and reported that she weighed 1660 grams or 3 lbs, 9 oz and measured 17 inches long.

My head was spinning after the birth. It was unlike anything I’ve ever experienced. My body was so exhausted and I had to fight to keep my eyes open. Even though they had taken Ruby to the NICU and I had no idea what she was going through, my mind and soul remained calm. I knew that Ruby was a fighter and that she would make it. God had his arms wrapped around her tiny, fragile body and I knew that He wouldn’t let go now.

When they brought Ruby to the NICU, it was obvious that she had a bowel obstruction. Her tummy was distended and they pulled 200 cc’s of fluid out of her bowel. It was also obvious that she had microcephaly, which means small brain, and she had very small and underdeveloped eyes and may be blind. Ruby’s lungs were in good shape and she never needed any oxygen.

Ruby had an MRI done the day she was born that showed that her brain was very underdeveloped and was about the size of a 25 week baby. This was devastating news to me. The doctors didn’t know what this would mean for Ruby. The neonatologist sat down with me and explained that Ruby may not ever learn to suck or swallow properly and that I may have to choose to put a G-tube in her tummy to feed her. This was a lot to digest.

Ruby had surgery to correct her bowel obstruction on November 15, her 4th day of life. The surgery went very fast and was very successful. Her surgeon came back after the surgery and talked with me about it. He told me that when he opened Ruby up, he found that she has a very rare condition called “Apple-peel atresia,” which means that the intestines are twisted around the main artery that supplies blood to the intestine. It is not possible to untwist them. He said that she had a small, missing section of intestine and that he was easily able to reconnect it again, thus fixing her obstruction.

Ruby had multiple eye exams during her hospitalization. The first opthamologist who saw her explained to me that she had micropthalmia, which means that the eyes are very small and underdeveloped with very small and clouded corneas. He said that he didn’t think she had any sight in her left eye and extremely low vision in her right (possibly only light recognition). I was devastated by this news. He told me that there was a possibility that Ruby could have a cornea transplant down the road, which might give her some sight in her right eye. Ruby was later diagnosed with an eye condition called Peter’s anomaly.

Ruby had always had a good sucking reflex on her pacifier, but she was never allowed to try it on the breast or bottle, so an occupational therapist worked with her on developing her suck-swallow reflex. She thought that Ruby would have some problems with feeding but Ruby surprised everyone and took to the bottle like a champ! She was on the fast-track to coming home.

On January 7, 8 weeks after she was born, Ruby was finally able to come home with me! It was the best day of my life. She wasn’t even supposed to have made it to her birth and now she was coming home with me. It was so surreal.

Ruby was diagnosed with an extremely rare syndrome called “Apple-peel atresia, microcephaly and ocular anomalies syndrome“. There have only been 4 documented cases of it in the world. Ruby has many doctor’s appointments every week. She sees multiple specialists to monitor her many health problems, but she is thriving! She smiles and laughs, plays with toys and has light perception in both of her eyes. She amazes every doctor who sees her. Her quality of life is excellent.

I thank God every day for leading me in the right direction to choose life for Ruby. Being a single mom with a special needs child is hard, but I have found strength inside of me that I never would have found had I not followed God’s plan. I have become a richer person and I have found a love in my heart unlike anything I could have imagined. Ruby has blessed so many lives in her 6 months on this earth. Because of her, there are so many people who now believe in the power of prayer. My Ruby is truly a rare gem.