On July 17, 2021, I went to my Obgyn Genesis clinic to find out the gender of my baby. I found out I was having a baby girl and on that same day I found out my baby girl had a serious heart defect. She was diagnosed with Pulmonary Atresia with intact ventricular septum; her heart was not developed correctly. I was 4 months pregnant. I was devastated and I cried so much. The doctors told me I had the choice to keep my baby, but if I wanted to terminate my pregnancy that was up to me. I asked, why did this happen? What causes heart defects? He told me that this could’ve been a bad luck pregnancy and that I did nothing wrong … it just happens to people. He said that this happened way before I knew I was pregnant. The doctor told me that babies with heart defects don’t usually make it to full term.

At that moment I wanted to terminate my pregnancy because I didn’t want my baby to suffer, I didn’t want my baby to feel any pain, but it was too late because my baby was fully developed. My mom was with me and told me not to terminate my baby. She was already fully developed. It would be different if she wasn’t fully developed, but she has everything: arms, legs, eyes, ears, nose, etc. – she is a baby and she deserves a chance at life. My mom told me to do everything I had to do to get through my pregnancy. She told me that my baby is going to be A MIRACLE baby … she is strong and she is going to survive. My mom told me to pray to her, talk to her and read to her every day and I did just that.

That same day the doctor did a test to check my baby’s chromosomes. I was so scared. The doctor stuck a big needle in my stomach to take a sample of fluid from my baby to run tests to see if something in our chromosomes caused this. Weeks later the results came back normal – all three – so we have no idea of what caused this to happen to my baby.

My big brother called me … he had already heard the bad news. My brother told me to eat healthy and drink a lot of water. He told me to keep my baby and that God blessed me with her. He said, “She is going to be A MIRACLE baby and God blessed you with her for a reason; you never know what she might become … she might come out and nothing will be wrong with her, those doctors don’t know everything.” He told me to take care of myself and eat healthy and that my baby is going to be healthy running around like her sisters. Those words really motivated me. My brother told me to do everything I can to keep my baby alive and healthy, and if all fails at least I can say that I did everything to keep my baby alive. He told me not to give up on her, so I didn’t. It was hard. I prayed and cried every day. My husband cried every day, too, but we always pray. My brother-in-law always told me to keep my faith and that my baby is going to be fine. We have a strong family; I don’t know what I would do without them, they helped me get through my pregnancy.

My mom wanted to name my baby girl Miracle, but I was like, “Mom, I love that, but I was going to name her Rah’Mya because I loved that name. It reminded me of my name Raneisha.” I said we can put Miracle as her middle name; my mom was so happy, she was like, “I love that because she is going to be A Miracle baby.” I said, “Wait a minute, I love that ma, I think I want to name her Rah’mya Amiracle – that sounds so cute!” My mom agreed. I called my cousin and she loved the name Amiracle. She told me, “I think it sounds better if you put Amiracle first because she is our Amiracle baby.” I told her I loved it! I fell in love with my baby’s name; it gave me hope and it made my faith stronger. So, we decided to name her Amiracle Rah’Mya Perez De Alderete. I decided to keep my baby.

I had to start going to a cardiologist at St. Joseph Woman’s Hospital and it was like every time I would go all I would hear is bad news. The doctors told me that Amiracle would have to get three surgeries throughout her life. All I could do was cry; this is what I had not wanted.  I didn’t want my baby to go through pain and I didn’t want her to have to get all these surgeries, but I had to do what I had to do so that was the plan. I had to get through my pregnancy. The doctors wanted me to keep my baby in as long as possible, until 38 weeks, because I had to get a cesarean. Because I had already had three this would be my fourth cesarean. The doctors let me pick her birthday so I chose October 28^th. I was so excited about her birthday! I prayed that we made it full-term so that she could be strong and healthy. We need her to be big and healthy for her surgeries.

One day my oldest daughter bumped my stomach and I thought I was fine. That night I laid down in grandma’s bed with my daughters and we fell asleep watching a movie. Grandma woke me up to go get the girls’ clothes ready for school. I used the bathroom and started to spot, so I asked grandma if that was normal – she told me no. I called my mom and she told me to lay down because I probably overdid it that day and to go to the hospital in the morning. I said okay and then I called my sister, who was with my big bro, and I told them what was going on and my brother freaked out. He told me that I needed to go to the hospital immediately, but I told him I thought I was fine and I was going to just lay down and rest. I was so exhausted, so I laid down while we were on the phone joking around. My sister and brother made me laugh and took my mind off of it. The next thing I noticed I felt a pop and I jumped up and had blood running down my legs. I immediately grabbed my purse and keys and told my husband I needed to go to the hospital. I was crying and screaming, “I’m losing her! I’m losing her!” I thought I had lost my baby! As I’m getting in the car I see my brother-in-law; I told him I think I’ve lost her and he told me to stay calm because I don’t know that yet. He told me to go to the hospital and that AMIRACLE IS GOING TO BE FINE! Watch.

So, we took off to the hospital. I get to St. Joseph Women’s Hospital and Amiracle is fine – moving around, kicking, her heart rate was good – but I was having light contractions. I explained to the doctors what had happened and the doctors assured me that the blow to my stomach from my 6-year-old was not strong enough to cause this problem. They did an ultrasound and found that I had a bruise on my placenta and that I was hemorrhaging, and that that could’ve caused the bleeding, so they decided to admit me into the hospital. I only could have one visitor, so my sister (who was already on a medical leave) stayed at the hospital with me until she couldn’t anymore. My husband worked and took care of our other two daughters, so he couldn’t stay sadly, but the nurses ended up letting me swap my sister and husband because my sister had to leave. It sucked that because of COVID we couldn’t have more than one visitor, but I made myself at home. The doctors and nurses treated me so well. They ran tests and did ultrasounds and found out I had gestational diabetes. I also found out that I was anemic and on top of all of that I had severe chronic asthma. The nurses got my asthma under control, but I never stopped bleeding. It would lighten up, but it would not stop, so the doctor thought that I had abrupt of placenta. They also thought that my water had broken. They told me that my placenta ruptured; it was something called preterm prelabour rupture of membranes, so I couldn’t go home, not even if the bleeding had stopped. It would have been a high risk of death for baby and me. The doctors told me that it was serious, I had to stay in the hospital until I gave birth. They wanted me to stay pregnant until 36 weeks because Amiracle had a heart defect. Typically a normal baby can be born at 33 weeks and survive, but that was not the case for Amiracle. We needed her to be big and strong because she had surgeries.

But, I went into labor at 33 weeks and 5 days. I had the worst contractions ever. The doctor did not want me to deliver just yet, but the pain was so severe that they had no choice. Amiracle Rah’mya Perez De Alderete was born September 20, 2021, just two days before her sister’s birthday. She was 4lbs 7oz. She was taken immediately to the NICU because she needed respiratory support. I didn’t even get to see her or hold her. When I recovered my husband immediately took me over to see Amiracle’s room and I was so in love. She was so beautiful and strong; she was tiny, but she was a strong girl. Amiracle stayed in the NICU for three weeks to grow and get the support she needed. She was later transported across the street to St. Joseph Children’s Hospital. She was in PICU pediatric intensive cardiology unit where she continued to grow and get everything she needed, including her first procedure and her surgeries.

Amiracle stayed in PICU for a couple of weeks. She got her first procedure; the doctors call it a cauterization. They had to put a stint in Amiracle’s heart so that blood could flow to her lungs to gain oxygen in her blood. The procedure was successful! Amiracle got her one procedure and recovered. I had to be fully trained to care for my baby: I had to room in to care for Amiracle at home, learn all the red flags, take a CPR class, learn the administrations of her six medicines and give them to her on time, and pump, feed and burp her every three hours and prepare her breast milk/formula recipe because cardiac babies have to gain a certain amount of calories every day. I had to learn how to weigh her and I had to record everything in an app every day because her nurse practitioner had to closely monitor her.

I learned everything – they trained me well – and Amiracle was sent home within one week. I was overjoyed and so excited! She was sent home on a plus ox machine. She had to have it on every day, all day unless she took a shower. It monitored her heart rate and saturations. I noticed that it kept jumping up and down; it kept dropping and was not picking up her pulse. I called her nurse practitioner and she told me it was normal and to keep her feet warm because Amiracle’s heart rate and saturations are not normal … her heart rate is usually higher than a normal baby and her saturations are supposed to be 75% or better. Amiracle was doing fine at home, controlling her feeds. Everything seemed normal. I took her to her first doctor’s appointment that next morning and her appointment went smoothly. I mentioned to her doctors that her sats were up and down (her nurse practitioner also met up with me for Amiracle’s first doctor’s appointment) and her doctor told me that she looks fine and to keep her warm. So, her appointment went great! We came home and everything was fine. I gave Amiracle her meds and fed her, burped her, changed her … everything as normal. I put Amiracle down for a nap and her heart rate and sats started to drop to 50%. Her heart rate also was dropping. She looked fine, but I noticed that her feet were really cold. I warmed her a blanket and wrapped her feet to warm them and they were still cold … I put socks on, I tried everything … so, I decided to call her nurse practitioner. I could not reach her so I proceeded to call the PCA Cardiology office. They told me that if I felt that it was an emergency to call the ambulance. They sent out an RRT to check Amiracle’s machines because I thought it was the machine acting up since Amiracle looked fine. Then her skin changed color – she looked grayish – so I called her father. He told me he wasn’t going to make it in time and to call the ambulance. Amiracle then did this cry that I had never heard before as if she was in pain. I called the ambulance. The RRT arrived and the ambulance arrived AFTER they gave Amiracle oxygen and THE RRT ASSURED ME THAT THAT WAS ALL AMIRACLE HE TESTED THE MACHINE AND THE MACHINE WORKED FINE! The paramedics immediately rushed Amiracle back to the hospital where she was admitted. I held my baby’s hands and fought back tears as the doctors did their jobs. Amiracle was taken back to PICU to be stabilized.

Dr. Dottie told me that Amiracle was really sick and that she was born with one coronary artery. I was in shock because I didn’t understand why I hadn’t been told that news. She assured me that she will do everything she could to save Amiracle’s life. She asked me to leave the room as she did her job and saved Amiracle’s life. The doctor later told me with tears in her eyes that Amiracle is going to need a heart transplant. I was so upset – Amiracle was not even home for a full 24 hours and was rushed back to the hospital. The doctor told me that Amiracle will have to be transported over to Shane’s Hospital in Gainesville. She told me it was 2 1/2 hours away from Tampa, FL, where we live. I freaked out! I told her that was too far; I have three other daughters at home to care for, I am not working and my husband is looking for work because he was laid off due to COVID. So I cried and prayed myself to sleep at Amiracle’s bedside that night. The next morning the nurses told me that they had found a hospital a little closer. I felt better even though St. Pete is still a little far, but that was better than 2 1/2 hours. Later that afternoon Amiracle was transported by helicopter to John Hopkins All Children’s Hospital where she is now. I met with the transplant team they went over everything with me. Amiracle had to take many tests; they had to learn her, get labs, etc., and they told me that she had to get approved to be placed on the transplant list. By the grace of God UNOS accepted Amiracle for a heart transplant.

We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA in honor of Amiracle.

She is now stabilized and awaiting a heart transplant. We are praying that she gets her heart transplant and comes home to live a normal life. We are not sure when she will come home; it is a waiting game. We are constantly back and forth to the hospital to be with Amiracle. It has been so hard, but there is a God and I have faith Amiracle is going to win this fight. We are going to stand by her until she wins.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.