Rayline’s Story - Congenital Diaphragmatic Hernia (CDH)

Rayline was diagnosed with CDH during our 28th-week ultrasound appointment. At first, I didn't realize how serious CDH was until I read a medical journal about it. My heart sank the more I read.

We decided to delivered by C-Section at the biggest regional public hospital in Bandung (We live in Bandung, East Java, Indonesia) as recommended by our OBGYN. That way, all the neonatal and pediatric team could stand by at the time when she was born.

I prepared myself for the worst scenario. I knew that she might not cry & I might not have the chance to hold her. As predicted, she did not cry when she was born! My OBGYN gave her immediately to the pediatric team, and they gave her oxygen. I could hear her faint yelp, but still no cry. They quickly intubated her, put her on a ventilator, and raced her off to the NICU. Everything happened so fast. I was finally able to see my baby the next day. When I saw her for the first time, I burst into tears.

After a thorough examination, the team decided to repair her left side CDH as soon as possible. The surgery was performed when she was two days old. The surgeon put her intestines back into her abdomen and closed her hernia with a patch. That day, my husband and I were filled with so many emotions. It was the hardest 3 hours of our lives. We've been together for 13 years, and it was the 2nd time I've seen him cry. I had never seen him so devastated, and I had never cried that hard in my life.

Rayline spent almost 2 months in the NICU. It was definitely a roller coaster ride. I never thought my most beautiful dream and greatest fear existed in the same place, in the NICU.

There was a moment I thought I was going to lose her, and I actually said goodbye to her. I told her that I love her so much and how proud I was. I also said, if she was tired and it was her time to go back to God, I'll be fine. But Rayline was a fighter. She refused to give up.

During her time in NICU, she was on and off the ventilator three times, and she had Chylothorax when she was about one month old. She also got pneumonia in her right lung. Moreover, she had so much phlegm, which caused her to vomit frequently. The phlegm made it difficult for her to get out of the ventilator. After a long journey, finally, she was installed with CPAP in the sixth week, and she was stabled. Then from CPAP switched to the nasal cannula. At last, on the 55th day, she was discharged but still using a nasal cannula. While at home, the oxygen dose was reduced and finally released a month later.

Although she can breathe independently, our struggle is not over yet. Even though her phlegm problem has improved, it's still there. Sometimes it causes shortness of breath. She currently needs nebulizer therapy. Occasionally she vomits once or twice a day, and on a bad day, she can vomit 3 to 5 times, which is why we are still struggling with her weight. Rayline also has motor development delays and doing motor therapy three times a week since she was 2.5 months old. She has shown a lot of progress but still needs to continue the therapy until she can catch up.

Rayline is a constant reminder to me that miracles do exist and God's help is real. She strengthened me and got me closer to God. She also made me more grateful for the little things in life.

She might be small, but she has a strong soul. She fought for her breath and her life from the minute she was born and refused to give up. I'm so proud of her and thankful for being her mom. She is a Tiny Hero, and I'm proud to say that I'm the mother of Tiny Hero.

Rayline's journey was incredibly emotional, not only for my husband and me but also for our families. Her situation broke our hearts. During our most difficult moments, the support from our families and friends really mattered. Thank you for the prayers. We feel very loved.

The Tiny Hero stories gave us the strength to continue and helped us through our darkest days. To all parents who are struggling with CDH, do not lose hope. You are not alone!

We are also grateful to have met such an excellent team in Hasan Sadikin Hospital: our incredible OBGYN, Dr.Dian Tjahyadi, who worked together with other great doctors like Dr. Anita (fetomaternal), Dr. Tetty & Dr. Fiva (pediatrician), Dr. Gezy (anesthesiologist), Dr. Rizky (pediatric surgeon), Dr. Rama (cardiothoracic surgeon), Dr. Harry (radiologist) and to all the residents and nurses in the NICU who watch Rayline day and night. We are forever grateful!