Diana Victoria’s Story
“These babies are very special, and we are very special for having them.”
Diana Victoria Rodriguez, 07/21/2007 to 08/07/2007, Trisomy 13, Plantation, FL
Hello, my name is Nora-Lee Rodriguez, my husband Nicolas and I are the proud parents of Diana Victoria. She was born on July 21, 2007 at 12:22 p.m. at Memorial Regional Hospital in Hollywood, Florida at 37 weeks, 20.5 inches and 6lbs 13oz. She was diagnosed with Full Trisomy 13.
She was our first baby and my parents’ first grandchild. We had been trying to get pregnant for almost a year, I had to take 3 pregnancy tests at home because I really could not believe it was actually happening, it was Christmas 2006, and we felt this was absolutely the best Christmas present we could have ever wished for.
We went for a routine ultrasound at 19 weeks at the hospital; the technician said she couldn’t see the umbilical cord well, but that everything was fine, she said she would have her report incomplete so our doctor could send us for another one. Well she didn’t, she wrote her report complete. First I was very upset, but then I found out everything happens for a reason, and God always has a plan.
On that ultrasound the baby didn’t show if it was a boy or a girl and we really wanted to know, especially to settle on a name, since we had the girl’s name (Diana was my grandmother, and Victoria my husband’s grandmother) but we couldn’t settle on a boy’s name (my husband wanted Nicolas like him, I didn’t want everybody to call him junior). So at that time we decided to go for a 3D ultrasound, which is not covered by insurance, but we reaaaally wanted to know what we were expecting.
We had to wait until I was 28 weeks pregnant for that ultrasound because they said it’s not worth it if it is 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 couldn’t believe it, 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, I even made my poor husband drive me to the store before going to dinner because I had seen a pajama set I loved but 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 is a diagnostic ultrasound, she suggested I called 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 the nurse set an appointment for the very next day with a prenatal 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 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 couldn’t stop crying. Imagine being 29 weeks pregnant and someone saying your baby might not survive.
My husband tried to keep me together, I could hardly 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 had the condition, can you fix it? He was very clear, there’s nothing they can 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; it was illegal in our state to terminate the pregnancy. 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 than good. We cried, we prayed, we 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 cannot even remember half of what the doctor said, but she had a heart condition, but he said we didn’t need to worry, she was growing fine and if she needed she could have surgery later.
Well we went to both doctors a few more times. 5 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 even 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 is better equipped to help us take care of her and 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, and she lives overseas, and it was her first grandchild, I wanted her to be present. That weekend, since my mom was here, my husband went to visit his mom in Boston. Well our precious baby wasn’t waiting too long.
On July 20 I went for that week’s checkup and my doctor said I was already 2cm dilated, she couldn’t believe it, since it was my first pregnancy, I asked her if it meant she was coming that weekend, she said she couldn’t tell. Well sure enough 3am 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 knew we were waiting for my husband, my mom was with me, I wasn’t alone, but I needed my hubby!! I was given Pitocin to speed up the delivery because I wasn’t having contractions, but since my water broke, they couldn’t wait. The nurse told me to relax, this could take a while. Again she was wrong, by 8:30a.m. I had my epidural I was in so much pain, by 11:40 she said, I’m sorry, this baby is not waiting, 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 doctor said she had a cleft lip and a cleft palate (we knew a cleft palate was much more serious, we were hoping it was only the lip). Again I cried.
After what it seemed 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, and extra finger on each hand, an extra toe on each foot, plus the heart condition, her head was a little too small, her ears were small. He said most of these babies do 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 that 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 (Neonatal Intensive Care Unit). My husband called and said he had arrived, 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, 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 that 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 all right, he went to see her and her doctor.
He came back worse than he left. He said the doctor was coming to talk with 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 do 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) was coming in 12 days, 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 just 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 that this precious baby that 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, I told my husband I was not going home without our baby.
That night at the room, I went on the internet, I had to learn all I could about how to help our baby. I have to say this website was sent from God, I don’t remember if I found it, or if someone sent it to me, all I can say is that the stories in 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, and 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 her for already 4 days, when so many people didn’t even had the chance to hear their babies cry. It helped me accept and be grateful and just pray 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 his wishes, 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 that depending on the results this could be an isolated incident, or it meant we could be carriers or a translocation, which meant this, could happen again. (It turned out to be an isolated incident, there’s only 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 at 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 also 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 10pm when we went to get a little sleep. We changed her diaper, which she hated, she had a lot of strength on those legs, whoo she could kick, but then I remembered she kicked really hard in the womb too!!.
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 45cc 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, 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, each taught us something different. They all knew mommy and daddy Rodriguez (that’s how they call parents in the NICU, by 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.
By Wednesday the following week I knew something was not right, she was crying so hard, longer than usual, 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 on 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; 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, she couldn’t stop crying.
Well they finally took it and everything looked normal. We were told Monday morning she was going for the surgery. 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 see the nurse screaming for respiratory, I almost fainted, our baby was desating, she had done it once or twice before but we just need 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 they said since she had so much secretion from the cleft palate, we had to suction several times a day, sometimes it happens and they bleed 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 too and I just broke down, I couldn’t stop crying. We started to pray. Pray for peace, for acceptance, for courage, for everything we needed. I went back inside, and we stayed until almostmidnight.
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, that last one was a very serious episode; they didn’t want to put her under unless they were sure she could stand it.
That morning we gave her a bath, and washed her hair, she was sooooooooooo 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 she knew I was mommy, and she was 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 8pm for a break and when we came back the nurse that was with her, ( which we hadn’t seen before) told us she 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 I will be grateful forever. She asked us if we were ready to let her go, that babies like adults need permission to go, to know we’ll be all right. She said our baby was miserable, she was gasping for air, and she was in pain that is 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, that at least at the hospital, we knew 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 that 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 ok, I can’t even remember if he was 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 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 ok, we told her it was ok to go, if that’s what she wanted, we were going to be ok. Later I found out the nurse said she started desating as soon as I held her. She asked us if we were ready, we couldn’t speak, we just nodded, and we held her and kissed her, the machines started to go off, they had it 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 and 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, she wasn’t gasping for air, she went peacefully, and that it the last image we have of her.
It has been absolutely 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, she pooped in my hands too!! We saw her stare at us. We spoke to her, 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 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 and it’s 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. These babies are very special, and we are very special for having them. We cannot decide who lives and who doesn’t. God is the only one who can make those decisions. We put all our faith in Him and let Him guide us through this ordeal and give us the courage to accept his wishes.
I can be reached at firstname.lastname@example.org
Nora-Lee Martínez de Rodríguez