CDH International’s featured patient of the week is CDH survivor Angela Reedell. She is the daughter of Scott and Megan Reedell. Megan had this to share about her daughter as she remembers their journey with CDH:
“Our story begins late September 2004. My husband (Scott) and I were beyond thrilled to find out we were expecting. This would be our first baby and the first grandchild on both sides. Lots of excitement ALL around.
I was one of the VERY unlucky people who started feeling VERY badly by week 5. I was vomiting many times a day and just overall felt terrible. The only comforting fact was that I was told “if you continue feeling sick, then the baby is thriving.” Little did we know what this little baby was going to be facing in the coming months and years.
We were excited to find out the gender at my 20-week ultrasound – which was right around February of 2005. I was still VERY sick, had lost weight, and was dehydrated. I had drank the amount of water required, but it looked as if I never even took a sip according to the ultrasound technician. Because of how dehydrated I was, the technician really had trouble getting the pics she needed. I was then referred to get a Level 2 ultrasound for clarification. I guess this was “a blessing in disguise.” Because if I hadn’t gone for that Level 2 ultrasound, Angela could have been born without any prior knowledge of her condition. Our story could be very different for sure.
I went to Abington Hospital, in Pennsylvania, for my Level 2 ultrasound with my husband. I had tried to drink as much water as humanly possible. The technician got a decent scan. The doctor then came in and checked everything out. He said everything looks okay, but he wanted me to come back in 2 weeks because he was interested to see the stomach empty. Oh yeah, and we found out we were having a baby girl. We were very relieved that everything looked normal and we were part of “team pink.”
Two weeks later I walked into the Level 2 ultrasound office by myself, after all this was just a follow-up. The tech and Dr. Smith sat down looking over the entire scan. Dr. Smith’s facial expression then changed. He had a puzzled look on his face. He went over the scan, had me reposition, scan again, and then said “I know something seems off, but I’m not sure what it is.” He made sure I understood that this could be nothing to worry about, but wanted me to get checked out at the University of Pennsylvania and CHOP (Children’s Hospital of Philadelphia) to be on the safe side. This appointment with Dr. Smith was on a Thursday. I got a call around 10am Friday saying I had an appointment Monday morning at 9am. This was the beginning of the LONGEST weekend EVER!
We tried to remain calm over the weekend. But that was the toughest thing to do. You NEVER want to think there is something wrong with your child. Monday couldn’t come fast enough.
Monday morning, we pulled in the parking garage at University of Pennsylvania, in Philadelphia, PA, at 8:45am. We checked in and I was immediately taken up for some scans. Within moments, the doctor said “your baby has CDH.” I had never heard of this and immediately started crying. At that moment the worst thought raced through my mind. The next few hours included LOTS of tests, meetings with new doctors (because now I was considered high risk and couldn’t go to my old OBs), LOTS of information, and LOTS of decisions to make. The bright part of the day was that when we met with the surgeon and pulmonologist. They reviewed all of the tests and scans and told us she was a left sided CDH’er. They said only her intestines were in the chest cavity and she looked VERY healthy otherwise. We were also informed that females with CDH usually recover quicker. So, her chances were better than many. We walked out of the hospital to our car in a daze. I was scared for my little girl. I was scared for us. This is any parent’s worst nightmare.
Now our goal was to keep her growing stronger inside me as long as possible. Our goal was 40 weeks – or June 18th. I was still quite sick, but managed to gain a few pounds. The doctors monitored us frequently. Each ultrasound and test showed she was growing perfectly and nothing was changing with the CDH. We got to tour the NICU (at CHOP), meet parents whose babies were in there for CDH, and get ready for what we were going to be experiencing in the coming weeks. The doctors said to expect a minimum of a month in the NICU. Some babies require longer times there. About 2 months is about average. Only time would tell how long Angela would be calling CHOP home.
I woke up at week 35 and began vomiting blood. I checked myself into University of Pennsylvania hospital and was in pre-term labor. My doctors checked me and said “we are going to stop this labor, give you some ulcer meds, and we are going to do our best keep you pregnant for hopefully another 5 weeks. This will give your baby girl the BEST fighting chance.”
They did get labor stopped. I was discharged and went home to my “surprise baby shower.” It was surreal because I was supposed to be blissfully happy at my baby shower, but instead it was always in the back of my mind “my baby has a defect and might not have a normal life ahead.” My baby shower was mostly gift cards and special little gifts because we didn’t know when she’d be ultimately coming home or what size she’d be when she got there. In the NICU the babies just wear diapers, and they provide everything during their stay. Definitely not your typical baby shower.
At 37 weeks we put the nursery together. We were cautious about doing it too early. Yes, her prognosis was good, but we didn’t want to jinx it. We then started talking about names. After a bunch of deliberation between the two of us, we decided on the name Angela Kirstin – which means “Angel of Christ.” Our little girl was going to need all the help she could get with the challenges ahead.
At my 38-week appointment I was informed that Angela was breech. Normally they’d try to turn her around, but because of her CDH, they were not attempting that. Unless she changed position on her own, she was going to born via c-section. We were scheduled for surgery on Wednesday, June 16th at 39.5 weeks. Everything was going smoothly until on Sunday June 12th around 11:30pm. Angela decided she was ready to get the show on the road. She broke my water. I called the hospital so they knew I was coming in. I checked in around 1am. My parents and sister met me down there. After getting everyone prepped for surgery, I was wheeled into the OR around 3:30am. My husband was by my side giving me the “play by play” – since all I could see was the blue sheet. I was excited and terrified of what was going to happen next.
At 4:26am on June 13th, 2005, Angela Kirstin Reedell was born. There was no cry. I wasn’t able to see her. She was immediately whisked away to the next room where she was placed on the ventilator. After she was “stable” Scott was allowed to see her in that room before they took her to NICU at CHOP, which was next door to HUP. He snapped a digital picture (remember this was 2005 and digital cameras were very new at this point) and came back to show me our little girl. She was beautiful. Now her job was to fight. And fight she did!
After my spinal wore off, I was able to be pushed via wheelchair to the NICU at CHOP. We got to see our little baby and hold her hand. She was covered in SOOO many tubes and wires, you could barely see any skin. I felt terrible for her. This is NOT the start to life I wanted for our baby. I wanted to hold her. I wanted to tell her everything was going to be ok. But most of all, I wanted her to fight as hard as she could!
The doctors and nurses filled us in on her condition. She was doing significantly better than they had expected. We were very relieved to hear there was no need for ECHMO (heart lung bypass machine). Usually babies with CDH have to wait about a week for their hernia surgery. They felt that she would have hers earlier. We spent as much time in the NICU as we could. We saw babies come in and go out. We even saw a few pass away. We were surprised when we were told that she was going to have surgery at 3 days old. Because these babies cannot be moved, the OR is brought to the NICU. It was an incredible sight to see these HUGE metal cabinets rolling down the hallway, knowing they are going to be used for surgery for our baby. Dr. Holly Hederick was the surgeon to repair her hernia. Angela’s specific hernia was too large to fix with the existing diaphragm muscle, so a Gortex patch was used for the repair. The surgery seemed to take forever, but in reality it probably was only an hour. I was relieved when Dr. Hederick came out to tell us “everything went perfectly.” Now it was time to start the healing process.
It was great to see Angela after surgery. Although she was very swollen from medications and the surgery itself. We could see her repair incision – which went from her belly button to her side. She was heavily medicated and would be sleeping for a while.
At this point we still hadn’t heard her cry, held her, or changed her diaper. This is NOTHING like what you imagine when you think of having a new born.
The next few days was mostly just sitting by her side talking to her. Holding her little hand. Each day she’d have a wire or tube removed. She would move around a little more. They’d reduce her medications as she was healing. I was allowed to stay at HUP for 5 days, then I was discharged. Leaving the hospital without your baby was the worst feeling in the world. I knew she was in the BEST place possible and would be getting the BEST care at CHOP, but I wanted to be with her all the time.
At least one of us was always there with her during visiting hours. The NICU was beginning to feel like our second home. The nurses became family. We would call and check in before bed and as soon as we woke up in the morning.
On Father’s Day we arrived at CHOP to a wonderful surprise. We would be able to hold her, and they might be able to remove her ventilator that day as well. All of that came true. We held our little girl for the first time. We heard her first raspy cry. I still remember saying to the nurse “I love the sound of that cry.” She sort of laughed and said “it’s cute for the first few days” … and we all laughed together. Our family was feeling more like “ours.”
Each day they continued to reduce her meds. The biggest challenge for CDH babies is to break the morphine habit post surgery. Many babies struggle with this for an extended period. I remember holding her one day and the nurses said “she’s going through withdrawal today. She will start shaking. Just hold her tight and we’ll give her a rescue shot of morphine.” Luckily, she didn’t have to go through this for long.
Up until this point, she was being fed breastmilk only by a NG tube. Every ounce going in and coming out was measured. We finally got to feed her from a bottle. I was able to change her diaper. I was finally doing some “mommy stuff” for her.
By day 16, I walked into the NICU and saw on Angela’s board “I’m getting ready to go home.” I was in shock. She had to pass a few more tests to prove she was ready to be released, but it was getting close. We had to learn how to put the NG tube back in and baby CPR. We had to go to Babies R Us and get all the basics for her to come home. We had to make sure the car seat base was installed. We were bringing our baby home and it was an incredible feeling.
We walked into the NICU, hoping that today was the day we get to bring Angela home. The nurses checked everything off the list. The surgeon, pulmonologist, and every other doctor in the world came to talk to us. The nurses were all smiles when they were packing up all of the items from her station. They loved happy endings. We were as prepared as we could be. Now parenting really began.
We waved bye to everyone at CHOP on the 30th of June. Angela was a fighter from day 1. And because of that she was out of the hospital in 17 days. She left the hospital on NO medications at all. Besides her NG tube and incision, she looked like every other baby out there.
This was all new for all of us. She had never been outside the hospital. She never rode in a car. We never had a baby. This would be a learning process for us all. The NICU wasn’t the best environment to get her onto a good “sleep schedule.” She was up at crazy hours of the night and slept off and on during the day. She would drink from her bottle, but we had the NG tube if she didn’t drink all of it as a backup plan. That sounded good until she got annoyed by the tube and ripped it out of her nose her first night at home. While we knew how to put it back in, we didn’t really want to have to do that. We called the hospital and they said “sometimes babies know when they are done with NG tubes.” And she did. She drank from a bottle like a champion from that day on.
She went for checkups at the pediatrician and CHOP as recommended. She amazed everyone at how well she had recovered. She was such a strong little girl.
She continued amazing the doctors month by month. When normal babies were crawling, Angela walked into their office. She was scoring high on all physical and cognitive tests. She was ahead of the curve. And that continued until present.
Today, Angela is 15 years old and a healthy “normal teenager.” She’s participates in track, synchronized swimming, and on the girls HS swim team. She’s a 10th grade honors student and in her free time works at a local pizza shop. She’s looking forward to starting to drive in December. She is an incredibly hard worker and we know the sky is the limit. She plans on going into the nursing field, because it truly is close to her heart. She proudly wears her scar and will forever be in debt to all of the doctors and nurses that gave her the best care those first few weeks.
In 2005 when Angela was born, the internet was MUCH different than today. FB was in its infancy. Web based Support groups were just beginning. I got most of our medical information from a book or the doctors. I remember my mom running to her medical books after our diagnosis of CDH because she wanted to find out as much information as possible. After all, she was a nurse and had never heard of this. I was given the CHERUBS website information at our initial hospital meeting. This group was full of stories and information about all versions of CDH. Before Angela, I never heard of CDH. Now I was able to read about what others have gone through, ask questions from a parent’s point of view, and be supported when we were having tough days. It was truly like a family. My real family was supportive, but no one understands what you are dealing with unless they’ve been through something similar. This is where the support groups helped immensely. Today I love being part of CDH FB groups and helping new parents get through what we did. And seeing other CDH’ers grow up, have healthy children of their own, and lead incredible lives. After all, this is the goal for every parent.
CDH International has done an unbelievable job getting CDH mainstreamed. Their support, information, and compassion has made a huge different in many families lives. We will always be proud to be part of the incredible CDH family.
I love talking about our story and getting the word out about CDH. No one ever wants to hear the word “defect” in regards to their child. But thanks to great advancements in medicine, incredible health care, and groups like CDH International increasing awareness and funding research, the future of our CDH’ers are brighter by the day!”