In the summer of 2009 my life was changed forever by three (not so little) words, congenital diaphragmatic hernia or CDH. I had never heard of CDH, and apparently neither had my doctors.
My husband and I went in for a routine anatomy ultrasound at 18 weeks pregnant. We had already had two perfect children, a boy and girl, so I convinced my husband that this time we shouldn’t find out the gender of the baby until the birth. Partway through the ultrasound the tech left to go get her supervisor, for a brief moment my heart stopped. I had been in this position before with my first pregnancy (it was my first ever ultrasound and I didn’t know that what I was seeing on the screen was missing a heartbeat until the tech brought in a supervisor who then explained that we had miscarried). But I pushed those fears aside quickly because that was the first thing I looked for at every ultrasound, and it was there beating strong. The tech came back with her superior and together they finished the all the measurements. Before we left, the tech asked if we were sure we didn’t want to know the gender of the baby. We assured her we wanted to be surprised, so she wrote it down and sealed it up for us, just in case.
After our ultrasound we went upstairs to our doctors office. Dr. Mahlab entered the room and did not sugar coat it. “Your baby has congenital diaphragmatic hernia, it’s a condition where there is a hole in the diaphragm allowing the stomach contents into the chest. There is very little chance of survival.” My world stopped. He couldn’t even tell us anything more about CDH, or possible outcomes. He didn’t know, he even spelled it wrong on the slip of paper he wrote out for us. Doctors at a major hospital, Dartmouth Hitchcock, didn’t know anything about the condition that was threatening to take my baby away. He then set up an appointment for us to see then geneticist in one week, then left us to gather ourselves before we left. My husband and I cried together for a bit, then we opened the envelope. We were having a little girl.
That afternoon we went home and broke the news to close family. Then like anyone facing so much uncertainty and devastation, I took to the internet to find some answers, or at least some information. There wasn’t much to look through, plenty of doom and gloom, but then I found a group called CHERUBS. There were others out there that have been and are going through what we were going through! The odds weren’t great but 50% had a lot more hope than the doctors had given me. She had a chance.
We had a slew of appointments and test with Dartmouth before we were finally able to be referred to Boston Children’s Hospital for a second opinion. Dartmouth made us wait until a couple months before our due date. They said that they wanted to have as much information available to see if it was a case that they would take on. Looking back now, I know I should have just gone around Dartmouth and talked directly to BCH, as they were surprised that Dart waited so long to refer. I’ll never forget how I felt that night we left Boston after a full day of appointments, ultrasounds, MRIs and consults. It was like a second wind, they were so positive and experienced with CDH. They had a survival rate of 90% at their hospital. Dr. Wilson had been working with CDH babies since the 80’s and he had an amazing passion for their care. Boston was it, we would have our baby- Mallory, at the Brigham hospital, and she would be immediately brought to the Children’s hospital via a bridge connecting the two. Now all we had to do, was monitor and wait.
On January 4th 2010 we went down to Boston to be induced. That night as labor was progressing things took a turn, and Mallory was in distress. They began prepping me for a cesarean section, which was devastating. It meant on thing to me, it would be much longer before I could be cleared to go see Mallory after she was born and bought over to the children’s hospital. When we arrived in the operating room they decided to try one more time to deliver Mallory without c-section, and they succeeded. They brought her over to my bedside so I could kiss her sweet little head, then brought her immediately over to the corner of the room to intubate her and prep for transport. My husband and I had decided that once she was born he was to stay by her side, so in a matter of minutes they were gone, and soon I was all alone in my hospital room. It was the most alone I have ever felt.
Finally three hours later the nurses cleared me to go visit Mallory, my husband came back and wheeled me to the adjoining hospital. It was one of the hardest things to see. She was so tiny among all the tubes and wires and Ivs, and her little chest was rising and falling so fast. I couldn’t touch her, or even speak in more than a whisper or her stats would drop and monitor alarms would ring. This was the first day of her 192 day hospitalization. Everything was still so up in the air.
On January 8th 2010 Mallory was put on ecmo (a heart and lung bypass) due to severe pulmonary hypertension. Then on January 9th while on ecmo Dr. Jason Smithers performed her repair surgery. They brought her intestine, spleen, stomach and liver down from her chest and cover the hole in her diaphragm with a gortex patch. Surgery went well, and things were pretty quiet for a while. On the 18th they were able to take Mallory off of ecmo.
On January 23rd My husband and I were asleep one floor up in the parent sleep spaces, when we got a call at 4am. Mallory was crashing. Her oxygen levels were in the 20’s and her whole body was grey. She was given a 10% chance of making it through the day. I remember when it really sank in that she was dying. One of her nurses came over to me, and said “at any point if you want to hold her, you just say the word.” at this point we hadn’t gotten a chance to hold her yet, and now she was dying. I had to call my mother and try to get the words out of what was going on, and that she needed to get here as soon as possible to meet her grand daughter before it was to late. My husband got on the phone to our church, soon my parents arrived, and all we could do was pray and wait. It was the most unreal day of my life, like a foggy dream. Finally around 3pm she came out of it. Her oxygen came back up and her skin regained color. It was a miracle. Even Dr. Wilson was amazed.
On March 12th 2010 Mallory came of the ventilator for the first time. For the first time since her birth I got to hear her cry. She was put onto a cpap machine. Unfortunately eight hours later her stats dropped, and the decision was made to reintubate. Luckily Mallory’s nurse was able to let me hold her for the first time ever while the prepped. It was brief, and she was sedated, but I will never forget that moment. Ever. They were able to extubate her again to cpap on the 16th of march, this time for good. She stayed on cpap for two weeks before transitioning to oxygen canulas, which she kept until he was one and a half years old.
In May of 2010 Mallory was able to move from the MSICU to a regular inpatient room. She had he second surgery in May as well. They put in a gtube and did a nissen fundoplication, because she had oral aversion from spending her first three months on sedation and paralyzers, and she was high risk for aspiration.
On July 14th 2010 Mallory Miracle May Givent came home. It wasn’t easy, she came home on oxygen, a feeding pump, helmet to reshape her head, and a handful of meds to be given multiple times throughout the day and night. We had an in-home nurse, and physical, occupational and speech therapists came to the house until she turned three, then she began going to our local school for these services (she still receives all three to this day). Mallory’s most recent surgery was a rod fusion surgery for her scoliosis (quite common in CDH survivors) in April 2015. She has amblyopea as a result of all the medicines and sedatives from when she was a baby, so she is currently working on correcting that with glasses, although it looks like surgery might end up being her best option.
After everything Mallory has been through, and will continue to have to deal with, she is the most amazing ray of sunshine I have ever met. We are so very blessed that she was able to pull through and come home with us. There are so many that do not survive. This is why research and awareness are so important to me, and why the CDH community would truly appreciate your help in raising awareness. Thank you.
Sara Givent
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