‘Are you ready to let her go? Babies sometimes need permission to go.’ I was so focused on bringing her home, I was shocked.’: Couple accept Trisomy 13 diagnosis, ‘Our angel had a short mission on Earth’

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“We went for a routine ultrasound at 19 weeks. The technician said she couldn’t see the umbilical cord well, but everything was fine. She said she would mark her report incomplete, so our doctor could send us for follow up later on. Well, she didn’t. She wrote her report complete, and our doctor, as well as us, were under the impression everything was okay.

On that ultrasound, we could not see if it was a boy or a girl. We really wanted to know, especially to settle on a name, since we had a name for a girl already picked. (Diana was my maternal grandmother, and Victoria was my husband’s maternal grandmother.) But, we couldn’t settle on a boy’s name. (My husband wanted Nicolas like him, but I didn’t want everybody to call him junior.) So, at that time, we decided to go for a 3D ultrasound. It was not covered by insurance, but we reaaaally wanted to know the sex of our baby.

We had to wait until I was 28 weeks pregnant for that ultrasound, because they said it’s not worth it if it’s done earlier than that. Oh what a day! We found out it was a girl!!! She had such a big smile on her face it was unbelievable, and huge cheeks like her daddy. We were so proud of our baby. From that very first picture, we knew she was very special. I went out the next day and bought all kinds of pink stuff for her. I had restrained myself from buying anything, since we didn’t know what we were having. But now, I made my poor husband drive me to the store before going to dinner, because I had seen a pajama set I loved. They only had pink, and I had to have it.

Well, at that ultrasound, we also found out there was something wrong with her lips. The technician just told us she saw something on her lips, but since this was not a diagnostic ultrasound, she suggested I call my doctor and tell her, in case she wanted to send me for a follow up ultrasound. I called my doctor the next day, and our amazing OB nurse set an appointment for the very next day with a high-risk specialist. My husband couldn’t make it, and I didn’t want to go alone, so we re-scheduled for the following week.

We went to the specialist believing he was going to tell us we had nothing to worry about. We were so wrong. He told us our beautiful baby had a bilateral cleft lip, probably a cleft palate, and a single umbilical artery. We were speechless. We had a thousand questions, but our brains couldn’t function. We asked, ‘What does it mean?’ He said it could be an isolated incident, or it could mean a chromosomal abnormality like Trisomy 13 or Trisomy 18, which is ‘incompatible with life.’ As soon as he said those words, I lost it. It felt like he had sucked the wind out of me. How could our perfectly, so wanted baby be ‘incompatible with life?’ Imagine being 29 weeks pregnant and someone saying your baby might not survive. My husband tried to keep me together. I could barely breathe.

The doctor suggested an amniocentesis. We were aware of the risks, especially this late in the pregnancy. We asked, ‘What would be the purpose? If she has the condition, can you help her?’ He was very clear, there’s nothing they could do if she had Trisomy, and it would only be to obtain information or confirm a diagnosis. Of course, he also told us we had to keep the baby to term; in our state it was illegal to terminate the pregnancy that far along. That thought NEVER crossed our mind. This was our baby girl, and she was coming no matter what.

We couldn’t go back to work that day. We couldn’t talk to anybody. We went home and went online to research as much as we could. I don’t know if it did more harm or good. We cried, prayed, and decided we didn’t want an amnio. What for? All children are a gift from God. If He was giving us this baby, it was our job to take care of her.

Since she had a single umbilical artery, the doctor sent me to a pediatric cardiologist to do a fetal echocardiogram. My husband couldn’t go with me, but I was very sure it was nothing. I told him not to worry. Well, it turned out to be more bad news. I can’t even remember half of what the doctor said, but she had a heart condition. He said we didn’t need to worry; she was growing fine. If she needed, she could have surgery later.

Well, we went to both doctors a few more times. Five weeks before she was born, we had another scare. The prenatal specialist diagnosed her with hydrocephaly and retaining fluids in her kidneys (I can’t remember the term he used). Again, he suggested an amnio, and again, we declined. This was our baby girl, and we loved her with all our heart. We were giving her every chance to make it. At this point, we still didn’t think she could have Trisomy. We just thought she had a few little problems — nothing we couldn’t handle.

We even met with a pediatric plastic surgeon to get information on the cleft lip. And, bless his heart, he was the one who suggested we deliver at Memorial Regional, which has the Joe DiMaggio Children’s Hospital, the #1 Children’s Hospital for Broward and Palm Beach Counties in Florida. We were planning to deliver at Memorial West, which was closer to home. But he said since our baby had a few problems, this hospital had a Level III NICU and was better equipped to help us take care of her. It was the best decision we ever made.

We had our baby shower when I was 36 weeks, a little late, but I was waiting for my mom. She lives overseas, and it was her first grandchild, so I wanted her to be present. That weekend, since my mom was there, my husband went to visit his mom in Boston. Well, our precious baby wasn’t waiting too long.

On July 20th, I went for that week’s checkup, and my doctor said I was already 2 cm dilated. She couldn’t believe it, since it was my first pregnancy. I asked her if it meant she was coming that weekend, but she said she couldn’t tell. Well, sure enough, 3 a.m. I woke up. My water broke. I called my doctor, and I woke up my mom. We had to go to the hospital.

I really can’t complain about my delivery, only that my husband couldn’t make it on time. I called him 5:30 a.m. to tell him I was in the hospital and to change his flight (he had an evening flight). All the nurses in labor and delivery knew we were waiting for my husband. My mom was with me, so I wasn’t alone, but I needed my hubby! I was given Pitocin to speed up the delivery because I wasn’t having contractions. Since my water broke, they couldn’t wait. The nurse told me, ‘Relax. This could take a while.’ Again, she was wrong. By 8:30 a.m. I had my epidural. I was in so much pain. By 11:40 a.m. she said, ‘I’m sorry, this baby is not waiting for Daddy.’ She was born at 12:22 p.m. I cried out of relief. But, when I heard her cry for the first time, I knew right away something was wrong.

The neonatologist took her from my doctor right away to assess her. After what seemed like just a few minutes, he came over and asked me if we could talk. I couldn’t stop crying, but I knew I needed to hear what he had to say. He said by looking at our baby, he knew she had Trisomy 13. She had cleft lip/palate, an extra finger on each hand, an extra toe on each foot, the heart condition, and her head and ears were a little too small. He said most of these babies did not live past the first year. I couldn’t speak; I could only cry. I was aching for my husband, but I didn’t even know how I was going to tell him.

I have vague memories of holding her after she was born. The pain was unbearable. Knowing as I held her I would have to say goodbye to this child we had prayed so much for was just unimaginable.

They took our baby to the NICU. My husband called, said he had landed, and he would be with me soon. He asked if my contractions were getting stronger. I had to tell him our baby was born, and he asked how she was. I told him she had a cleft lip/palate. He asked if everything else was fine, and I told him to just hurry. I had to stop myself from crying. I couldn’t tell him over the phone.

When he finally made it to the delivery room, I started crying as soon as I saw him. How do you tell your husband your baby girl has a fatal condition? He said he knew something wasn’t right, but he needed to see me. I told him our daughter was in the NICU. After he made sure I was alright, he went to see her and her doctor.

Courtesy of Nora-Lee Rodriguez

He came back worse than he left. He said the doctor was coming to talk to both of us. He showed my husband a book with photos and a description of our baby’s condition. It also said some babies with this condition did not live past 7 days. I was heartbroken. I started thinking of my father — his first grandchild, and he probably couldn’t meet her. My sister — her first niece (it’s just the two of us). She was coming in 12 days, and she might not make it in enough time either.

The doctor came to see us with a DNR (Do not resuscitate). He tried to explain to us, as gently as he could, that most of these babies die naturally in their sleep, and it would be unfair to them, and us, to keep them alive with a machine, knowing there’s not much they can do for her. We both decided we didn’t want our baby living through a machine, and we agreed to sign it.

It was supposed to be the happiest day of our lives, but we couldn’t stop crying. We couldn’t breathe. We needed to tell our family. How do you tell your family this precious baby everybody was waiting for and praying for wasn’t going to make it probably more than a few days, or even a year? It was heartbreaking. We felt the world had stopped, time wasn’t passing by. We hoped it was all a bad dream.

I stayed in the hospital until Monday (I delivered Saturday). That Monday morning we met with the social worker, who was absolutely an angel. She gave us a lot of information and even arranged for us to stay at the Conine Clubhouse, across the street from the hospital. Since we lived over 30 minutes from the hospital, we qualified to stay there for free, that way we could stay with our baby all the time we wanted without having to worry about driving. We moved from our hospital room to the clubhouse, and I told my husband I was not going home without our baby.

That night, I went on the internet. I had to learn all I could about how to help our baby. This was before Facebook, Instagram, and Facebook Groups. I have to say,  www.trisomy.org (back then it was livingwithtrisomy13) was sent from God. I don’t remember if I found it, or if someone sent it to me. All I can say is the stories on this website, both of the angels and the living, gave me strength to accept our diagnosis, to know we weren’t alone, to know there were people who could help who knew what we were going through. It showed me we were already blessed for having this baby girl at 37 weeks, and this big, and to have had her for 4 days already, when so many people didn’t even have the chance to hear their babies cry. It helped me accept and be grateful. I just prayed to God to give me the courage to accept his wishes and to please not let our baby girl suffer.

Every night, I would go online and read a different story. I learned of the struggles and of the joy of other people’s experiences. I prayed every night to let God do as He wished, to please take care of her, to protect her but to please not let her suffer. I felt He really was listening, and in the end, He would do what was right.

We had to stay at the NICU for that first week, waiting for the test results to come back. They had to go to a lab outside the state, and they needed to confirm the diagnosis. We met with a genetics specialist who told us, depending on the results, this could be an isolated incident, or we could be carriers or a translocation, which meant this could happen again. (It turned out to be an isolated incident. There’s only a 1% chance it can happen again.)

Our baby girl could not be breastfed, but that didn’t mean she couldn’t have breast milk. So, that Monday, I started pumping milk in the room they had at the NICU. At first, it was really hard and really painful, but I knew our baby needed every ounce of strength she could get, and that included my milk. She was started first on formula, and her little stomach tolerated it.

All that week, we spent every day with her. She was fed every three hours, and one of us was always with her, at least until 10 p.m. when we went to get a little sleep. We changed her diaper, which she hated. She had a lot of strength in those legs — oh how she could kick! — but then I remembered, she kicked really hard in the womb too!

Courtesy of Nora-Lee Rodriguez

That Friday, Diana Victoria was almost a week old, and the results came back. It was full Trisomy 13. Now we needed to think about bringing her home. They had her on oxygen, but we could do that at home. The only problem was the feeding. We were working with a therapist and using the Haberman feeder, but she was up to 45 cc, and she was only taking 15 or 20 with the bottle, the rest through the feeding tube. We didn’t want to bring her home with that tube. They can pull it out at night, and we had to learn how to put it back. Honestly, I didn’t think I could do it. Seeing our baby cry made me cry too.

Our only other option was a PEG tube, inserted through the outside of her stomach. I just wanted to bring her home, but my husband didn’t want her to go through that surgery. He wanted to give her the chance to learn to use the bottle. We decided to give her a few more days. The doctor said he was giving us until the following Thursday. We spent all those days with her — feeding her, changing her, rocking her to sleep, holding her as much as we could, talking to her, and keeping her warm (hospitals are so cold).

We learned so much from the nurses. Every shift brought a new nurse and new techniques and experiences. They were absolutely wonderful; we couldn’t have done this without their help and assistance. Everyone was an angel in their own way, and each taught us something different. They all knew Mommy and Daddy Rodriguez (they call parents in the NICU by their last name) were always there and hands on. They knew we could take care of her by ourselves, another reason why we wanted her home.

Courtesy of Nora-Lee Rodriguez

By Wednesday the following week, I knew something was not right. She was crying so hard, longer than usual, and it took me an hour to feed her. I asked the nurses if maybe it was gas, but they couldn’t give her anything. I begged my husband to let them do the PEG tube. I just wanted her home.

My sister arrived that Thursday. I was so happy because I was so afraid she wasn’t going to make it in time. She was able to hold her niece and take beautiful pictures. I wish I had taken more pictures of her, but I was so sure we were going to bring her home, and I didn’t want to take more pictures with all those tubes.

By that afternoon, we told the doctors we were doing the PEG tube. First, they needed to do an x-ray of her stomach and make sure it was working properly. It was so painful. They took forever to do that, and she was hungry. She just needed to eat, and she couldn’t stop crying. They finally took it, and everything looked normal. One of the surgeons met with me Saturday morning and said everything would be ready for Monday, and a few days later, we could take her home. I was so happy! I called my husband, and he went home to get the baby’s car seat so we could be ready.

That Sunday night, everything was going as usual. I went to the room to pump milk, and my husband was with our daughter. When I came to her room, I saw the nurse screaming for respiratory. I almost fainted. Our baby was desating. She had done it once or twice before, but we just needed to lift her head and rub her chest, and she was fine. This time, it was much more serious. That Sunday morning, I noticed she had a little blood in her mouth. I asked what was happening, and they said since she had so much secretion from the cleft palate, they had to suction several times a day. Sometimes it happened and they bled a little. She managed to come back, but the doctors said it was very serious and told us she might not make it through the night.

I had to go outside to the waiting room and tell my mom and my sister, who had not left our side, what was happening. She was with some friends, and I just broke down and couldn’t stop crying. We started to pray. Praying for peace, for acceptance, for courage, for everything we needed. I went back inside, and we stayed until almost midnight.

Monday morning, we went to the hospital early, we didn’t know if the surgery was happening or not. They had suspended it until Thursday because that last one was a very serious episode. They didn’t want to put her under unless they were sure she could stand it. We gave her a bath and washed her hair, and she was soooo happy. I had never seen her that happy! I felt so bad my husband wasn’t there and I didn’t have our camera, but I was so sure I could do it again at home. It was like she was at a spa. After we dressed her, I was holding her, and for the first time, she was staring at me for longer than before. I felt like she was truly looking at me and knew I was her mommy. She was so peaceful and happy.

We went out to lunch that afternoon. We needed a break after the last couple of days. We called the hospital, and she was fine. We went downstairs at around 8 p.m. for a break, and when we came back, the nurse who was with her (which we hadn’t seen before), told us she’d had another episode. She said she didn’t need to call respiratory; she was able to bring her back, but it took her a little longer than usual.

Then, she said a few words I will never forget and will be forever grateful for. She asked us, ‘Are you ready to let her go? Babies, just like adults, sometimes need permission to go — to know you will be all right. Your baby is miserable.’ She was gasping for air, and she was in pain. That’s why she was crying so much and so hard. She was in pain and it was her only way of telling us. She also asked us if we’d rather let her go to heaven from the hospital or at home. She said a lot of parents blame themselves when it happens at home, but at least at the hospital, we would know she had the best care possible and people who knew what they were doing. I was so focused on bringing her home, her words shocked me.

My husband and I started crying. I think in my mind, I had accepted the fact I needed to let her go, but it was much more difficult for my husband. He wanted to believe so bad she could be with us much longer. That night, we held her tight. We told her Mommy and Daddy loved her very much. My husband tried to tell her it was okay. I can’t remember if he was even able to utter the words.

At around midnight, we went to the room to get some sleep. We were afraid of what could happen, but since it happened the night before, we thought she was going to make it. At 6:00 a.m., the phone rang. It was the NICU, and we had to go over there ASAP. When we got to the hospital, the nurse had tears in her eyes, so did the doctor. She was hardly breathing. She said she had another episode, and this one was really bad.

We started crying, but I needed to hold her. We told her it was okay to go, if that’s what she wanted. We were going to be okay. Later I found out she started desating as soon as I held her. She asked us if we were ready. We couldn’t speak; we just nodded. We held her and kissed her. The machines started to go off, and they had to put them on mute. She passed away at 6:40 a.m. on August 7, 2007. She waited for us; she died in my arms listening to my heartbeat, just like when she was in the womb. She went to heaven in her mommy’s arms, being caressed by her daddy and listening to both our voices. You cannot ask more from God than that — to give you the chance to say goodbye. She died sleeping. She wasn’t crying or gasping for air. She went peacefully, and that it the last image we have of her. The nurse closed all the blinds and the doors, and gave us time to be with her as long as we wanted. They went outside to get my mom and my sister. Our little angel had left us, on her own time, when she knew we were strong enough to accept it.

It has absolutely been the hardest thing we have had to go through, and we will miss her forever. But at the same time, we are grateful for those 17 days we had with her. We saw her smile. We had her sleep in our arms. We saw her stare at us. We spoke to her and sang her lullabies. We absolutely enjoyed every day we had her. We cannot be anything but grateful to God for giving us those memories, for letting us get to know her. She had a temper like her daddy (some say her mommy too). She had really soft skin and beautiful black hair. She is our little angel, and she will forever have a very special place in our hearts.

I need to leave a message for anybody who has a prenatal diagnosis: Don’t lose faith. God knows His plan for us, and even though we may not know what it is, He knows. And even though we will never understand why, we keep our trust in Him. We put all our faith in Him, let Him guide us through this process, and give us the courage to accept His wishes.

Fast forward to 2018, and our family has been blessed with two beautiful rainbow babies. Our 10-year-old Michelle, born a year and a week after Diana, and out little firecracker Gabriella, born in 2014. Both girls are aware of their sister in heaven and come with us to the cemetery to bring her balloons and flowers. Both are incredibly blessed to have their own little angel look after them.

Courtesy of Nora-Lee Rodriguez

My wish in my lifetime is for doctors to stop using the term ‘incompatible with life.’ Our angel had a short mission on Earth, but nothing is incompatible with our love for her. Some Trisomy babies do survive; not all pass away before their first birthday. Every single one is different. At least give the parents the tools to make informed decisions about the care they want for their little baby. Our babies are not defined by their diagnosis. Don’t let doctors define them for you.”

This story was submitted to Love What Matters by Nora-Lee Rodriguez. Has your family had a similar journey? We’d like to hear your story. Submit your story here, and subscribe to our best stories in our free newsletter here.

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