Featured patient of the week is CDH Survivor Oona Shink. Oona is the daughter of Sharon and Nick. Sharon had this to share about Oona:
“Oona’s journey begins the day we found out our baby has CDH, it was my 20 week ultrasound. Originally we decided we were not going to find out the gender, but when the doctor told us that our baby has CDH, that changed everything. I remember crying so hard I couldn’t continue my appointment and walked out. I immediately started doing research, gathering all the information I could about CDH. Someone had suggested seeking information from Cherubs, who ended up giving me some hope. I continued to see my high risk OBGYN here in Maine, who was not very reassuring. They gave me little hope and told me the chances of my baby surviving were slim. Even with all the negative feedback from my doctors, organizations like Cherubs kept me going.
We knew we had to make some serious decisions to save our daughter’s life. I decided to do research on all the top hospitals and ending up choosing Boston Children’s. I arranged my own appointments and asked for a referral from my high risk OBGYN. I can tell you it was the best decision I have ever made. They sat me down my first appointment and told me they handle babies like ours all the time and they were confident they could save her. I felt so much relief at that moment.
We started saving money and pulling from our savings and 401k to prepare for anything that may come our way, as CDH is so unpredictable. I was so glad we did, because my pregnancy was anything but typical. I had gestational diabetes and high amniotic fluid which put me into preterm labor at 31 weeks. I was taken by ambulance from Maine to Boston where they stopped my labor and I was admitted for 2 weeks. They decided to keep me in the area because it was too risky to go home. At this point, my family was torn apart. I had my 10 year old at home and had to make arrangements for her. My husband stayed with me at a local hotel and put in an unpaid FMLA. All the money we had pulled went towards housing at a hotel for 2 months prior to delivery.
I went into labor at 36 weeks. I had been contracting so heavily from high fluid that I could barely tell I was in labor. I labored for 20 hours and only 45 min after they broke my water, Oona was ready to make her appearance. They rushed me into the OR which I had to deliver there to fit 30 doctors and nurses that were ready to work on our daughter. After an hour of pushing, beautiful Oona was here. I remember feeling them lay her on me and I looked down and watched her gasp for air. She was trying so hard to breathe but she couldn’t. They immediately took her and started the intubation process. I watched from a distance as my husband laid his hand on her head. I know he was scared and trying to comfort her at the same time. They wheeled her across the walk bridge to Boston Children’s.
I remember my husband pushing me in my wheelchair over to see her and I didn’t know what I was walking into. As I stood up and looked at her, I almost fell over. I could not believe everything that was hooked up to her. My heart just broke. Oona was not in the condition that they had expected and she needed more support. She was put on an oscillator and the next day she was put on ECMO. Day 3 she had her repair surgery while she was on ECMO. I leaned down and kissed her forehead before they took her in for surgery and just lost it. I cannot describe the feeling, unless you have gone through it. Day after day we sat with her talking to her and holding her tiny hand. We got to know her ECMO specialist, nurses, and doctors. We asked many questions and were just blown away at how special each and every one of them were. We felt so lucky Oona was in the care of so many talented people.
Oona came off ECMO day 16. She truly was successful at every milestone. Shortly after ECMO she had a stroke and brain bleed. A couple days later we discovered she had a massive infection in her abdomen. They believe it was from a hole in her intestine. Oona went septic and her o2 and blood pressure were dropping. I got the call and rushed over from my room. The hall was flooded with doctors and I knew it was bad. At that time they gave Oona a 50/50 chance of survival. They put in a drain in her abdomen and the contents that came out, you would never think a person could survive having that in them. Oona kept chugging along, she had 2 chest tubes during this and another drain put in. After getting most of the infection out, her antibiotics were finally able to work. She was on the antibiotics for 3 months. At this time she also had massive clots from pic lines and IVs and she was on blood thinners twice a day for 3 months. We knew at any point a clot could come loose and cause another stroke. She had a lot of ups and downs. She became tolerant to her pain meds, which required higher doses, for she had just been on them for too long. Just when we thought we were moving forward she developed an obstruction that required surgery. Doctors removed 4 inches of her small intestine and did a full wash of her abdomen. She was cut from arm pit to arm pit and ended up having an iliostomy and at that time they put in a gtube to avoid a future surgery knowing she would need one at some point. After surgery and 3 incisions Oona was in so much pain, even on meds. It’s hard to imagine a tiny baby going through that. Her wound came open a week later and she had a wound vac put in. It literally looked like someone had taken a chain saw to her chest as the stitches came apart all the way to the last layer between her abdominal wall and the outside, it was absolutely horrifying. Even at 7 months old her wound is still open in a small area that I bandage every day.
Two weeks after surgery she was extubated after 4 months, this was a day we had been waiting for. I just wanted to see her smile without a tube down her throat. This was a bittersweet day because as I was crying tears of joy over Oona’s success and I was also crying tears of sadness as I had to watch our ICU neighbor lose their baby to CDH at the same time. I grew an attachment to this little one, as she was born around the same time as Oona. From a distance we watched her journey and it made it so hard to see. I wish badly she could have had the same outcome as Oona. It still hurts to think about and I pray for her parents all the time. Almost losing Oona changes you and you have an understanding of the pain of parents that aren’t as lucky. As the weeks went on, Oona was really progressing. She went through some significant withdrawals from meds, but she made it through. We went up to 10 East and started getting ready for discharge. She went through a few more bumps but I was able to handle anything at that point. There is nothing easy about this journey and it changes you. I am so strong and so equipped to care for my baby and I thank all the professionals educating me and setting me up for success. They made it possible for me to feel confident making sure my daughter gets through this and gets everything she needs. I am her number one advocate and I always will be.
189 days in the hospital and we are finally home. My family is whole again and I feel so blessed. I do feel sad from time to time, because I do feel robbed of certain things like breastfeeding, not holding her until she was 3 months or feeling her tiny body against mine, and the list goes on and on. These are things a lot of parents take for granted. Her journey isn’t over as CDH is lifelong. One day at a time is how we live. Our lives are certainly different than other families as Oona is on oxygen and tube fed and we constantly worry about sickness and have strict rules. I wouldn’t change it for a second though. She brings joy to our family and has truly showed us what strength really is. This is Oona’s story and I hope one day she can educate others about CDH also and give hope to others.”