Hi my name is Emma Woodward, and this is my story
When my mom was 25 weeks pregnant, I was diagnosed with end stage kidney failure. At the same time they said my lungs were under developed from a result of poor kidney function, and I had fluid around my heart. My mom took 2 steroid shots to help my lungs grow and catch up to my gestational age. The doctors said when I was born, that in time during my first few weeks of life the fluid around my heart would resolve itself and go away on its own. At 27 weeks, they tried to take me out of my mom because there was no amniotic fluid around me to keep me alive. That resulted in a hospital stay for my mom. They had her hooked up to an IV and had a monitor around her belly to keep track of my heart beat to make sure I was ok. That day before she was released from the hospital, my mom had gotten a new OB and midwife, and they promised her that they would closely keep an eye on me and made sure I made it to full term for them to try and save me when I made my arrival. They had explained to my mom that it was too early at only 27 weeks to deliver me. I was too small for all of the needles and medical equipment they had for them to do any kind of blood work or testing to see what they were going to need in order to keep me alive. So from 27 weeks on to 38 weeks, my mom had to go back and forth to Fresno 2 times a week to get ultrasounds and do stress testing to make sure I was still growing and there was enough water in my mom’s tummy for me to breath.
At 36 weeks my mom went to see her OB to determine how I was being delivered and what my game plan was from there. They informed my mom that she would be delivering me via C-Section. He reassured my mom that he had performed many C-Sections that she didn’t have anything to worry about and that he would handle me with care when I came out. He went over that she would get to have bonding time with me before they took me to Valley Children’s Hospital to see what they needed to do for me to live. Everything was set in stone; all the paperwork was signed. And my mom went on her way back home.
May 12th of 2021 was the day my mom’s OB decided he was going to deliver me, so my mom and dad headed to Saint Agnus Hospital in Fresno, where I was born at about 12:30 pm. Weighing in at 8 pounds and 12 oz. My dad came over to cut my cord and quickly went back to my mom’s side to make sure she was ok. Unfortunately, my mom didn’t get the bonding time they had planned for us because when I was born, I screamed too loud and one of my lungs partially collapsed. So from there they had to immediately take me down to their NICU to see what had happened, and that’s when they found out that my lung had partially collapsed. So they had to give me morphine to keep me quiet so I didn’t scream and collapse my lung the rest of the way.
After about 24 hours my mom came to see to make sure I was ok. I was asleep and sedated because they were prepping me for surgery to put a G-TUBE and dialysis catheter in my stomach. After surgery was done, my mom came back to see me. I was still quiet because I was still on morphine waiting for my lung to heal. About a week goes by and the doctors told my mom that they had to remove my dialysis catheter and put it on the other side of my belly because it wouldn’t stop leaking. So my mom and dad gave the consent for the surgery. This time it was a success, and I again had to slowly be winged off the morphine. Aside from all that I was unable to eat because in order to check how well or how poor my kidneys were functioning I had to do a calorie free diet, which meant no breast milk until my doctors felt it was safe to feed me. They monitored me for about 3 more weeks after that which puts me at a month’s stay already in the NICU. Finally at a month old, they told my mom that was able to eat, which means all the IV’s that were for nutrition could finally come out. My mom tried to feed me with a bottle, but I missed that bonding time with my mom, so I didn’t know how to take milk from the bottle. I took about 5 millimeters before I started to choke because I didn’t know how to suckle, or swallow. So my mom decided it was best for my safety to give the rest of my milk to me through my g-tube, and that was just how I was going to eat. The doctors reassured her that it was ok because fed is best, and mom was pumping milk for me so I was getting the good stuff. Meanwhile, I was supposed to wait until my surgery for my catheter healed in order for me to use it, but unfortunately, my kidneys just couldn’t do it anymore. Their function was slowly but surely becoming little to none, and I had no choice but to start dialysis. However, it was ahead of schedule for me to start dialysis, which meant I was going to come home soon. But before I was able to use an actual machine, they started me off at a low dose of “sugar water” is what they called it in short terms, to dialysate me with. You have to successfully tolerate 150 millimeters of sugar water in order to use the machine they were going to send me home with. They told my mom that they were going to increase the volume every 3 days until I was at 150 to try and use the machine. In the meantime, they had a nurse from a local dialysis center that specifically dealt with the youth that also had this disease come out and show my mom and dad how to use the machine. They had to learn how to use it in order to get me home with them. After about 3 weeks of me being on dialysis and my mom and dad learning how to use this machine, getting cpr certified, signing every piece of paper regarding me and my care, the nurses and doctors had confirmed that it was finally ok for me to come home and meet the rest of my family. They scheduled a discharge date; my mom and dad had to stay the weekend with me in the hospital – they called it a 48 hour stay – to make sure that mom and dad could properly take care of me. It was a mission, but they did it. From May 12th of 2021 to July 12th of 2021, I was in the NICU. Little did I know being released from the hospital was only the beginning of my journey.
About 2 months after being released from the NICU, I woke up one morning not feeling so well and had a fever. My mom was advised to take me to Valley Children’s to have me admitted to see what was wrong with me. Unfortunately, my results came back that I had COVID. This resulted in a 3 day hospital stay just to make sure that was the only thing that was wrong with me. After I was released to go home, they advised my mom to just quarantine and wait for it to pass as there was no known cure for COVID at the time. Throughout the course of my first year a life, being on dialysis, I was in and out of the hospital many times after that. I ended up coming back almost every month if not every other month with something new. I ended up catching RSV and peritonitis. RSV, as we all know, is an upper respiratory infection. I was in the hospital luckily for only a week because I was on oxygen, and they said I could go home once I was breathing better without it. Peritonitis is an infection in the abdomen area where my dialysis catheter is and is common to get when on peritoneal dialysis. That also resulted in a hospital stay, and my mom and dad had to learn how to put antibiotics in bags that I used at home for dialysis so I could go home.
After that, every other month it seemed, I kept having to go to the hospital for an infection that they kept finding in my blood. They couldn’t figure out why I kept getting them, until one particular hospital stay. I again had to be admitted to the hospital for an infection; however, this time was different than the rest. After 3 days of testing, nothing was coming up. They couldn’t find out what was wrong. They did an ultrasound of my kidneys and still couldn’t find anything – until my mom suggested that we should probably try a CT scan. She knew this wouldn’t get us closer to home, but maybe there was something that we were not seeing in the ultrasound. Once mom was finally able to convince the doctors to do CT scan, we finally got some answers. I ended up having an infected cyst on my left kidney, which resulted in a minor surgery. They got me all ready, and went in and drained the infected cyst on my kidney. Once they drained it, I immediately started showing signs of progress. Within the next day or 2, I was home with my mom dad, healing and resting from an almost 2 week hospital stay. After that, I finally was staying out of the hospital for more than a month at a time, thriving and growing. In all that time, I learned to crawl, walk, run, and I even began talking.
Almost a whole year went by since my last hospital stay. So much had happened. My mom and dad bought a house, both me and my brother got our own rooms, more room to play. We got a puppy and mom named her Nova. She’s super playful and really nice to me. We had both my and my brothers birthday in the new house. I turned 2 and my brother turned 5. Unfortunately, I ended up breaking my streak of no hospital stays. I went in for my normal monthly labs and my doctor called my mom on the way home and said I needed to come back because my blood work came back abnormal and said I was anemic. We stayed in the hospital for 2 days. I ended up getting a blood transfusion due to low iron and really low hemoglobin. After my blood transfusion I looked and felt much better and was able to go home.
Now here I am. I’m almost 3. So far I have been evaluated for transplant 4 times – 2 times in person, and 2 times on paper. The first 2 times they said I wasn’t big enough and I didn’t have enough of my shots, and the third time they said my blood pressure was too low. So mom, dad, and my nephrologist came up with a plan to get me to their standards for transplant so we could get me a new kidney. This 4th time I went in person for evaluation, and my mom and dad talked to the whole team. They were all amazed by how big I had gotten and by how much I was talking and how well I was doing being in a room all day with just my mom and dad and only a select few toys. They were all so nice to me and so amazed by how well I was doing given the circumstances for me being there. We let them know that I have gotten all my shots, I have gained the weight that I needed, and my blood pressure is doing so much better. And after nearly 6 hours of us all being in one room, talking to each person that is trying to help coordinate all of this, they all came to the conclusion that they are ready to put me on the transplant list. Mom and dad signed any and all paper work that they needed us to sign; they walked us all over to the lab for me to get my blood drawn, and told us now it’s just the waiting game. We are waiting to hear from insurance, and everything to line up the way it needs to, for me to get a kidney transplant.
I am Emma Woodward and this is my story.
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.