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“…the only thing that mattered is that I gave my daughter a chance.”
Audrey Regalado, Trisomy 13, 1/10/13 – 5/4/13, Torrance CA
We found out Audrey had Trisomy 13 during our 20 week ultrasound. Audrey’s father and I had no idea that anything could be potentially wrong with our baby; all we had on our minds was the excitement of discovering our new addition’s gender. However, we started to get nervous when our technician was very quiet, and there was somewhat of a grim feeling in the air. She took many different measurements and photographs, and nearly forgot to look for the gender of our baby. It seemed as if she had many more important things on her mind.
After being left alone for more than 30 minutes, another doctor finally came in to tell us that they feared something was wrong with our baby. More specifically, she had a cystic kidney, and she had white spots showing on the ultrasound around her heart, which usually signifies some sort of heart defect.
We were referred to a perinatal specialist and within 20 minutes were going for a more accurate and sensitive ultrasound. Everything the previous technician had observed was correct. Our doctor suspected a chromosomal abnormality, such as Turner’s Syndrome, and assured us that aside from being short in stature, and possibly having reproductive issues, she would lead an otherwise normal life. However, he suggested I undergo an amniocentesis to be sure. I was hesitant, but we felt it was important to know exactly the tribulations of what our daughter could possibly be facing in the future.
3 days later, we got called back into the office with devastating news. Our daughter had Full Trisomy 13, and was not going to live full term, they said. Abortion was the only option, they said. However, being that we were being seen at a conservative Naval hospital, they would not offer the procedure there. I was at 21 weeks gestation, which meant we only had a few days to decide whether or not we needed to make an appointment to terminate the pregnancy elsewhere. Reluctantly, I agreed to the procedure.
We went as far as signing the consent paperwork at the abortion clinic. When they pulled me back to change into a hospital gown, I walked by the rooms of women in the same gowns, lined up on a bench waiting for their turn; it was a literal abortion factory. You could actually hear the machines and their suction sounds down the hall (I promise I am not making this up). That is when I decided that this is not what I wanted. My daughter deserved a chance. I knew I was choosing the harder way, and even if I lost everyone along that road, in the end the only thing that mattered is that I gave my daughter a chance.
The pregnancy was pretty uneventful in itself. We never had any scares, never had any issues with her heart rate, and she was even growing at a normal pace. When the last few weeks approached, it was time to start discussing the labor itself. It looked like we were finally in the clear, after months of wondering if we would lose our daughter, we finally reached the great realization that we would get to meet our daughter. I’ve had doctors tell me that they would not offer me a C section if Audrey went into distress, because she was “just going to die anyway”. They urged that it wasn’t worth risking my life, because she was “just going to die anyway” The doctors urged us to not bother monitoring her heart rate, because if it started to drop, they didn’t expect to intervene. This is the harsh reality when expecting a child who has trisomy; doctors see that as a death sentence and will do as little possible to save the life of the child. We wanted to give her the same treatment and opportunity as any other “healthy” baby, so that is what we chose to do.
After being in labor for nearly two days after being induced, they decided I needed a C section after all. I didn’t care about my own body, as long as my daughter was born safely. Instead of being awake for the C section, I had to be put under general anesthesia, because my epidural had not numbed my abdomen properly. Audrey was born 3 minutes; however I did not leave the operating room until 4 hours later. They had sliced the front and back of my bladder, cutting it in half, and requiring me to need 4 blood transfusions.
Audrey was alive. Unfortunately, I was the last person to see her, because I was not able to leave my bed due to my surgery. Audrey was alive and okay, and that is all that mattered.
The day after her birth, Audrey underwent a minor surgery to correct her omphalocele, and for placement for a gastrostomy tube, because they expected she would have feeding issues, as expected with babies with trisomy.
As the days and weeks progressed, Audrey healed and grew stronger. There was careful monitoring on her kidney, which was severely large and multicystic. One cyst on her kidney was the size of what one kidney should normally be. It was also concluded that Audrey had Congenital Heart Failure, Tetralogy of Fallot, a VSD, and an overriding aorta; as well as urine reflux. She was able to eat by mouth, but due to Gastroesophageal Disease, as well as fears of aspiration, she still would take many feeds by her G-tube. She was on 5 different medications multiple times a day to help with the management of all of her issues because of trisomy.
Eventually, after learning how to properly administer her medications and care for her g-tube, Audrey was strong enough to come home on hospice care. She was home for two days before I realized something wasn’t right. Her coloring was off… Her lips were blueish, and her skin was ashen. She also had a really bad cough.
Her first big health scare happened in urgent care at the hospital. After all the regular vital signs were taken, they hooked her up to a pulse ox. Upon realizing her oxygen levels were under 80%, she was rushed by ambulance to a hospital that was equipped to handle her condition. Eventually they concluded she had RSV, which to healthy adults is normally similar to the common cold, but for infants, especially infants with abnormal immune systems like Audrey, it could be deadly.
Eventually Audrey was able to come home again, although she was never able to get off of an oxygen tank. She was home for two weeks, until she needed to go back to the hospital for routine shots.
This was her second big health scare. She was a bit agitated, because I had to dress and undress her (she HATED that, and diaper changes). She was crying, pretty hard. All of a sudden, mid cry, she never inhaled. Her body turned purple, then blue and gray, and completely stiff. She went unconscious. Within seconds, Doctors, nurses, and eventually paramedics flooded the room to revive her. She was unconscious for more than 3 minutes, and they got her breathing again. This would be the first of many episodes like this.
Audrey was hospitalized for the remaining months of her life. She fought through recurring pneumonia, and various other infections. Eventually Audrey was no longer able to tolerate feeds through her g-tube, so she needed IV nourishment instead. This resulted in the placement of a picc line, which is a catheter IV that leads towards her heart, to help administer her TPN, medications, and to reduce the amount of times a day she would need to get poked by a needle. Since she needed to be put under general anesthesia for this procedure, she needed to be intubated.
Audrey had quick declines, and slow recoveries. After being intubated for a few weeks, she was never able to be extubated. She needed to have another surgery, a tracheostomy. She did well; she seemed happier, more comfortable, and even her health was steadily improving. There were finally talks of Audrey coming home again.
Very quickly things went downhill. She was battling many infections and was not able to be weaned off of TPN; she could not tolerate feeds in any amount. Her kidneys started declining, and her cystic kidney was growing bigger and bigger. It put so much pressure on her stomach and caused very severe distention and tightness in her belly. Eventually, she started having her episodes of not breathing and her oxygen levels going dangerously low when she wasn’t even crying. She would need resuscitation for longer and longer periods as time went on.
On May 4th, I got a call at 5:00am from the hospital. I knew what they were going to say before I even answered. Audrey was having an extremely rough night. She needed manual resuscitation almost throughout the entire night, and they could not get her oxygen levels above dangerous levels no matter how long or hard they tried. There was nothing they could do to keep her alive at this point, so they medicated her to keep her comfortable and everyone went to the hospital to be with her on her final day.
Throughout the morning, Audrey’s oxygen levels were around 60%, going higher and lower here and there. We had a chaplain come and bless her before it was her time to go, and when he walked into the room, her oxygen saturation immediately jumped up to 100%.
About 30 minutes later, Audrey became an angel. We bathed her, held her, and spent as much time as we possibly could before she was taken away. In the days to come, we prepared for her funeral. We were blessed to have such an outpouring of support from friends, family, even strangers, that we were able to cover her funeral costs based on donations from those who followed Audrey’s life, and we are forever grateful. Audrey has a beautiful eternal resting place that she deserves thanks to the support of all who loved her.