Mom to Brianna
Born and died July 8, 2010
Toa Baja, Puerto Rico
I discovered I was pregnant on Christmas Eve 2009. I saw a very faint second line on the pregnancy test. I then confirmed it on Christmas Day. It was the best gift ever. Having had a blighted ovum two years before, I considered her my rainbow baby and we were happy to have been blessed again.
I always wanted to have a girl. Really wanted a girl. With my first pregnancy I had a boy. A wonderful, magnificent, perfect little boy without whom I couldn’t imagine my days. And this being my last child, I definitely wanted a girl. From the beginning, I felt the baby was a girl. Mother’s instinct, I guess. We officially found out she was indeed a girl on March 26, 2010. I was soooo happy. It was amazing. I couldn’t believe God was blessing me not only with my beloved boy, but with the girl I always wanted. Life was good.
I felt her move for the first time at 16 weeks. Earlier than my son, who I felt at 19 weeks. 3 little kicks I felt as I was watching Celebrity Apprentice at home. I knew it was her. I kept feeling her ever since.
Time went on with no eventualities. Everything was perfect. I had no morning sickness, no constipation, nothing. Just a craving for lemonade that went away after the first trimester and some intense sleepiness. Sonograms came and went, my weight was right on track my blood pressure was excellent. A perfect pregnancy.
Then, on May 28, 2010 my life changed forever. I was 26 weeks pregnant. Just about to start the 3rd trimester. At my appointment that day, the sonogram technician did the usual stuff so I suspected nothing and you can imagine my surprise when the doctor came in and said something that sounded like: “You know, there was some fluid around your baby’s lungs that’s not supposed to be there. We don’t know what it means…it could be nothing, but I recommend that you see a primatologist and have an in-depth ultrasound done. He will tell you what to do afterwards.” Needless to say, I left that office terrified and crying. I knew something was wrong. Very wrong. No one is supposed to have fluid in, around or near the lungs/heart. Even less a 26 week old fetus. I had no answers. My first reaction was to go to my son’s pediatrician, who was once my pediatrician. I explained what my OB/GYN said, but he said he’d never heard of something like that and told me to come back after I saw the perinatologist so he could see the diagnosis.
My OB gave me a list of perinatologists in Puerto Rico (there are not many) to call and schedule an appointment. The one that could schedule me soonest was a week and a half away: June 9, 2010. I had to find some answers in the meantime, so when I got home I Googled “fluid around the fetal lungs”, “fluid in fetus”, “fluid in lungs”, but not much came up. No answers. I had to wait. No choice.
Finally the day came. After a loooong wait and no lunch…we saw the doctor. The technician scanned and scanned. Then the doctor came and scanned some more. I could clearly see the fluid and the lungs. They did not look good or healthy. They looked like two little shriveled sponges trembling inside the chest cavity. The rest was black: the fluid. After that we met with the doctor in his office and an avalanche of words came out of his mouth. Hydrops, amniocentesis, advanced maternal age, ascites, edema, Down Syndrome, Turner Syndrome and AFP among many others. The one that stuck the most was Hydrops. Hydrops Fetalis. He said that what my baby had was “bad, bad, very bad” and it did not look good. He said a syndrome was probably causing it because of my age (three days before on June 6 I had turned 35). They suspected Down or Turner syndrome and they recommended me to have an amniocentesis to know for sure and decide on how to proceed. Also, as per my Peri’s recommendation, my regular OB had to discharge me as a patient and I would be from now on visiting my Peri’s office at the hospital for appointments on Fridays. He would be my doctor from then on. I was instructed to go in the next Friday and register on the Hospital’s High Risk Clinic. From that day on, I was a high risk patient with a poor prenatal diagnosis.
We left that office feeling defeated. I had no control over the situation. Nothing could be done but wait. I also didn’t know what to do about the amnio. I was scared about a needle going in my belly, but at the same time, I felt like I had to know what was going on with my girl and be prepared for her care. I was also scared about having a diagnosis so final and definitive. Once I had it, it would be real; there would be no turning back, no more hoping it was nothing or that it would just go away. Was it best not to know and keep on thinking that everything would magically resolve in the end?
That day I shared the news with my parents. I was all becoming real now. My daughter was sick. She could die. She would have special needs. She was not healthy. She was probably going to die. She could die inside me. She could die at birth. At home I Googled Hydrops Fetalis and found no consolation. Mortality rate was over 90% in most cases. Pictures of dead swollen babies paraded before my eyes. This is the stuff that can make you go crazy. My husband was also very distraught. He was concerned with how we would financially support a daughter with special needs and the changes that it would bring to our lifestyle. I was more concerned with her survival. Lots of confusing thoughts rushed through my mind. Suddenly I felt distant from my daughter. I wanted out. I didn’t want to have to wait anymore. I wanted answers. To know how it would all turn out in the end. Would everything be worth it? I am not a lucky person, but I’m also not an un-lucky person either. I’m fairly average and these sorts of things don’t happen to me. They happen to other people. I felt so frustrated and helpless. Those were very intense days.
On Friday, I went to register as a patient at the hospital. The doctor ordered the nurse to hook me up a fetal monitor for a Non Stress Test (NST) for my baby. Everything looked fine. Then he came personally to tell me he was having me admitted because he was fairly sure that my baby had anemia and had to have a transfusion in-utero. His colleague, who had more experience with this type of case, would handle the procedure and “my case” from now on.
I was alone at the hospital that day because I thought I was only going to register and go home, but all of a sudden I was being admitted and having a high risk procedure that could cause me to go into labor and lose my baby. I would be spending God knows how many nights away from home and couldn’t say goodbye to my son and explain what was happening. I was extremely nervous. I called my husband and told him to join me in the maternal emergency ward.
I was admitted and changed into a hospital robe. I was taken to Labor and Delivery to wait until the doctor could see me. Men weren’t allowed so my husband had to wait alone in the hallway. I could hear women laboring and moaning while I was again hooked up to a fetal monitor. Braxton Hicks were going like crazy. Several interns came in to check on me and it turns out I was not having Braxton Hicks, these were real contractions. They were painless though, but they were coming 5 minutes apart and I could definitely feel them. Finally the doctor came in. He introduced himself and told me the procedure consisted of inserting a needle through my belly into the umbilical cord. There, they would take a blood sample that would be analyzed for fetal anemia. If it came back positive, special fetal blood would be requested for a transfusion via umbilical cord again the next day. He also informed me that my baby would be born prematurely and by C-section due to her troubles. After I consented to this, I was taken by wheelchair to the sonogram room where my husband joined me.
One look inside my tummy and the doctor said, “This baby is not anemic.” I don’t know what he saw, but he sounded sure. He advised me that he would use a needle and drain the fluid on my baby’s left lung (he couldn’t reach the right lung because I had anterior placenta and I have Rh negative blood and that could bring on other complications). He told us we would wait until next Monday (this was Friday evening) and see what happened. He didn’t give us much hope, though. He said the fluid would probably come back. If it didn’t, it was a matter of luck, not his expertise, but we should give it a try. So we did. On Monday all the fluid was back and then some.
So, to try to make this long story not as long, I came every 3 to 4 days for the fluid to be drained from the left lung. Doctor said it was a good sign that after the liquid was removed, the lung expanded like it should. One time we considered putting shunts in, but later decided against it because of possible problems with my blood and placenta in the way. I finally had the amnio done, and that too came perfectly fine. My daughter’s chromosomes were as they should be. 3 weeks went by.
As time went by, I became used to the procedures and started feeling a little positive about outcome. I felt that there may be a slight chance for survival since all the tests came back negative. I was hopeful seeing her lung expand as the fluid was drained and believed that since the hydrops was first seen at 26 weeks, the development of her lungs was complete so once born, with a little medical help, this fluid could be drained and her lungs could function. My doctor had a suspicion it could be a condition where there is a malformation of the lymphatic system called chylothorax. Chylotorax causes lymphatic fluid to spill into the chest cavity but it can be fixed right after birth without major complications.
I was 30 weeks along when I started noticing some swelling in my right ankle. But the swelling would go away or be reduced significantly if I lay down on my left side. It would be gone in the mornings and creep up again during the day. I consulted with the doctor and he said not to worry. Edema is normal in pregnant women. By week 31 both ankles were significantly swollen and the swelling would not go down even if I laid down the whole day. At my weekly appointment the doctor noticed right away and my blood pressure had started to rise. He quickly decided that my baby would be born the day she turned 32 weeks. The next Thursday. Thursday, July 8, 2010.
The day finally arrived. I woke up happy with expectation. I would meet my daughter today. Even though I knew things didn’t look good and my daughter in spite of all her complications would be born prematurely, I had hope. I hoped to at least be able to share some time with my daughter. I hoped she could survive it all and then be able to brag about the miracle of her life. But I had hope. I was also very nervous about the procedure that would be performed that day. I had never been operated on, so I didn’t know what to expect and the thought of a needle going through my spine really freaked me out. But I was ready. This was the moment I had been preparing for in the last eight months, especially the last month. Hopefully everything that could be done was done and the decisions taken were the right ones.
By this day, my legs were severely swollen all the way to my hips. I couldn’t even bend them at the knees if I tried. I was very uncomfortable as they inserted a catheter and gave me some medicines to prevent nausea, etc. I was also quickly hooked up to an IV and seated on a wheelchair to wait for my last thoracocentesis. My daughter’s left lung would be drained one last time just before going to the OR.
When all was set and done, I heard the doctor say, “Let’s begin.” I was alone in the OR. My husband wasn’t allowed to be present. I didn’t know the doctor performing the C-Section, but I was totally numb, and I felt relaxed and at peace. I kind of had a good feeling about everything. I was concentrating on the beeping of the machine beside me that measured my vitals and tried to remain calm. As time rolled by, I started feeling an itch in my nose and fingertips that the anesthetist said was a good sign that the anesthesia had taken well. All of a sudden I started feeling some strong tugging and pushing at the top part of my belly near my ribs. I looked up and one of the doctors said, “They are bringing your baby out now.” Suddenly the tugging stopped. I heard a nurse yell out 11:16, when my daughter was silently born. At that exact moment my doctor walked in and I heard him talking with the neonatologist. I started feeling dizzy and my anesthetist told me that she had put a sedative into my IV. I kept on listening. I heard my perinatologist briefing the neonatologist about Brianna’s journey in-utero and the procedures she had been through. Specifically, how much fluid had been drained that morning and from which lung. I remember hearing a gas flowing. I assumed oxygen. At some moment I fell asleep.
“Mom, open your eyes…” I opened my eyes and there she was. My baby. The one who had been kicking me so hard. She was wrapped up just like a newborn in something, I can’t remember what, but it was some kind of hospital material/fabric. “We did all we could,” said the neonatologist. I remember thinking: “Is she dead?” “My daughter is dead?” I couldn’t talk. I just looked at her. The neonatologist said to touch her and kiss her so I did. And as I did, a drop of watery blood came out of her nose. The doctor quickly cleaned it up and they took her away.
They kept working on me for what seemed like an additional half hour, sewing me up and putting me back together. I knew my baby was still inside the OR because from where I was, I could clearly see the way out and no one had left with her. When they finally took down the piece of cloth that limited my vision, I could see on a table at the far corner the warming blanket kind of laying there in a messy way. I asked where my baby was and the nurses confirmed I was right. She had been left there alone. I asked if I could see and hold her again so they brought her to me. I asked them if my husband could come in and see her and they said they had to check first if he knew the outcome, if not, someone, I guess an “official”, had to give him the news and then he could come in. I was wheeled to a nearby room, and on my way there I saw my husband walking towards me. He already knew.
We were allowed to spend what seemed like 10 seconds with her that actually turned out to be about a minute, maybe a minute and a half. We watched her and kissed her goodbye. I remember feeling her weight on my arms. She was warm, very white with purplish lips and eyelids. Her mouth was open. Her forehead was swollen and it looked kind of like if she was frowning and her eyes were tightly shut because of all the edema. Her chest looked big and “squared”. In that brief moment, I knew I would forever love my daughter. She was perfect and special and she was a little fighter. I would never forget her or let her be forgotten. I wanted her to survive and be part of our family. At that moment I knew I was ready for the challenge. I couldn’t see anymore from where I was because the nurses wouldn’t allow me to sit up. I didn’t see her legs or feet, but my husband assures me she was a perfect baby in every way. All the time droplets of blood kept dripping out her nose. I cleaned her up every time with a gauze the nurse had given me and that was it. Brianna was born and gone on that unforgettable summer’s day.
Brianna’s is buried in a tomb with the remains of both of her great grandmas, her great aunt and her great, great aunt in Bay View Cemetery in Cataño, Puerto Rico. She was buried there a week after her death on July 16, 2010 and had a beautiful service at her grave. It was attended by her loving parents and brother, her grandparents, aunts and uncles and cousin. After 6 months of waiting for the autopsy report, the results came again as idiopathic (no cause found for the hydrops).
You can contact Eva at firstname.lastname@example.org.