RECEIVING THE DIAGNOSIS
I found out I was pregnant in February of 2018. It was unexpected, and I am single, but I was beyond excited to be a mom. I had a completely normal and healthy pregnancy, and I never struggled with morning sickness. I had my first ultrasound at 8 weeks and 5 days gestation, which was just one week before they would have been able to discover my daughter’s diagnosis. Instead, I found out later in my pregnancy.
At 19 weeks’ gestation, just days before my 24th birthday, I went in for my routine ultrasound. May 15, 2018 will always be the day that changed my life forever. I remember watching the ultrasound technician looking closely at the screen, and I asked time and time again if it was a boy or a girl. She kept saying, “I don’t usually do ultrasounds like these, let me just ask somebody,” and “I don’t think I can tell well enough to give you an answer.”
As the scan went on, I saw very clearly that something was wrong. I asked her, but she said she couldn’t tell. The scan lasted forever, and she kept saying, “I need more scans of her heart.” Finally, she said I could go, and I asked again, “are you sure everything is okay?” It was not okay.
An hour later, my doctor called me and told me that my daughters chest cavity didn’t form, meaning her heart developed on the outside of her chest cavity. That was it.
CHOOSING TO CARRY AND MORE UNEXPECTED DIAGNOSES
The next day I met with the Maternal-Fetal Medicine specialists, and they confirmed a diagnosis of ectopia cordis. Following confirmation of the diagnosis, I was asked whether or not I wanted to continue the pregnancy. I told them I wanted to continue.
I went on to have an amniocentesis to rule out trisomy 13 and 18, and the test results came back negative. The doctors told me that my daughter, Dylan, was given a 10% chance to make it to delivery.
At 25 weeks’ gestation, I was taken down to Rochester, Minnesota for more scans and to meet with the team of doctors who had handled a single case of ectopia cordis before. Through MRI, it was discovered that Dylan’s liver was also on the outside of her body. Dylan was then diagnosed with partial Pentalogy of the Cantrell.
At 30 weeks’ gestation, I had another MRI, which found that more of Dylan’s intestines were protruding than they had originally seen. At 34 weeks’ gestation, during a routine ultrasound, I learned that Dylan was fluid overloaded, and she was diagnosed with hydrops fetalis, yet another fatal diagnosis.
DELIVERY AND EVEN MORE UNEXPECTED DIAGNOSES
Following the diagnosis of hydrops fetalis, Dylan was delivered urgently by a team of over 35 doctors via emergency C-section. She was born on August 31, 2018, at 3:01pm. She was 6 weeks early, and she weighed in at 6 lbs, 3 oz.
At delivery, doctors discovered that Dylan had Tetrology of the Fallot, which meant a diagnosis of a complete Pentalogy of the Cantrell. She had premature lungs, a diaphragmatic hernia, an omphalacele, no sternum, and she remained open-chested.
A surgical team of over 30 doctors and nurses worked to save Dylan’s life and close her chest. She coded on the way back to her room in the intensive care unit, and she was placed on ECMO life support.
FIGHTING TO DEFY THE ODDS
After 8 hours, I was finally able to see my little girl. She was covered in tubes and wires and full of fluid, but she was the most beautiful thing I had ever seen. I don’t remember much from that night, but I remember a nurse continually saying “your daughter is really, really sick. These first 48 hours are very critical.” I remember going back to my room to cry.
Even though I wasn’t able to hold her, I sat by her side and read her books, sang songs, and she held on oh so tight to my finger. She and I soaked up every minute we had together.
On September 20th, the doctors told me, “there’s no better time to see if she can sustain life off of ECMO, and if she can’t then we need to discuss our next options.” After that, they took Dylan to the OR to trial her off of ECMO. Hours went by without hearing a thing, and I spent those hours waiting and thinking of the worst-case scenarios.
I finally got the call that Dylan was back in her room, and that she was still on ECMO. I was absolutely crushed, knowing that now I’d have to discuss how I wanted to let my daughter go. I went back to her room, and I saw my lifeless little girl, white as a ghost. A nurse practitioner came in and said, “Dylan did great, and she accepted the wean.”
I kept thinking to myself, “then why does she look like that? And she’s still on ECMO?” The nurse practitioner continued, telling me that when Dylan’s cannulas were taken out, she was so anti-coagulated that she bled out, requiring 2 minutes of cardiac massage and a blood transfusion to bring her back.
My little girl had died, and all I could do was stand there and stare at her. They did EEGs, and they did head ultrasounds. She was paralyzed, but everything continued to be normal. She had gotten over yet another hurdle.
A SECOND ATTEMPT AT COMING OFF ECMO
On September 29th, they took Dylan to the OR again to wean her off of ECMO. She came off successfully, and she was doing great. Then, all of a sudden, her numbers started jumping, and doctors were coming in and out of the room giving her blood tests every 15 minutes. Minute-by-minute, everything seemed to get worse.
Finally, they discovered that the chest dialysis that they were experimenting with was taking all of the meds out as soon as they entered her body, causing her to become even sicker. They stopped dialysis. Day-by-day, Dylan got more fluid overloaded, and she started getting bed sores. She couldn’t open her eyes, and she couldn’t even move. On day 3, her numbers started getting high when they needed to be low, and low when they needed to be high. She was dying, again, and this time because of acute renal failure.
By 10 that night, things started to get really bad. Doctors were giving her more and more medication to keep her alive. I called in a chaplain to pray for my little girl- that she would go pain free. Dylan’s heart rate dropped, and then her blood pressure dropped. I knew she was telling me she was tired. I had decided in that moment to let Dylan go-to ease her pain- and then, her heart rate jumped back up, her blood pressure went back up, and I knew that was Dylan telling me she wanted to fight this fight some more.
MORE DIFFICULT DECISIONS AND PLANNING FOR GOODBYE
I opted to put Dylan back on ECMO to give her kidneys a chance to start working. Days went by, and her kidneys still didn’t show up. They were pulling fluid with dialysis through the ECMO circuit, and she began to look like my baby again. Within days, she started to get sicker with infection. There was no kidney progress, and the decision had to be made.
She had to come off ECMO to clear her infection, but she wouldn’t survive long enough, and her skin was too fragile to be put back on ECMO. I talked to the doctors about how I wanted to let Dylan rest. I talked about my wishes for Dylan, and I called a funeral home. I called my family, who came immediately.
We all soaked up our final days with Dylan. We got pictures and keepsakes. A hospice nurse came to sing “Hallelujah” to Dylan. Of course, we cried. We laughed. We talked. We sat in silence.
SAYING GOODBYE TO MY LITTLE FIGHTER
I waited 6 and a half weeks to hold my little girl, and when I got to, I held her for as long as I could before she passed away. All Dylan knew was love in her 6 weeks of life. I’m still in awe that my little fighter lived for 6 weeks. She had been given a 10% chance of even making it to birth, but she lived 6 weeks.
Dylan passed away peacefully on October 13, 2018 in my arms surrounded by loved ones.
Hearing the doctor say, “I don’t hear a heartbeat. Time of death: 12:25pm,” was the loudest silence I have ever heard. In that moment, I lost my entire world; my most precious gift. In that moment, we all gained a beautiful guardian angel.
Dylan fought so hard to be here with her loved ones, and to this day, I don’t regret carrying Dylan to term. In those 6 weeks, more people grew to love Dylan, and I was able to see Dylan’s personality shine through.
I will never regret the chance at life that I gave Dylan, despite the ups and downs, because I got to know the most special little girl. She will always have a place in my heart. She defied the odds because I decided to carry to term. I’m a strong believer that all parents should be given the chance to do as I did. I haven’t yet met a parent who regrets carrying a baby to term, and even 10 seconds with your baby is completely worth it.