Pippa’s Story - Congenital Diaphragmatic Hernia (CDH)
At our 20 week scan, the sonographer sent us for a coffee half way through. She said the baby was being cheeky and was in the wrong position. Classic! We thought no other worry was given. We came in and out a couple of times after that before she said we needed to go straight to the hospital because something was wrong with the baby's tummy. At that moment, everything changed. There was no more excitement, just pure fear, and panic. As we left, she said, "Oh-- and it's a girl," with a forced joviality. That always stuck out for me. The exciting, normal part was just gone. We couldn't wrap our heads around it anymore.
We were lucky to live close enough to Sydney Children's Hospital to be referred there. They never used percentages or numbers. They just said, "Yeah, looks like another garden variety CDH." Awesome, we can cope with garden variety. We had so much hope and so much fear. I was induced at 39 weeks; that way, all teams were ready for us and on standby, even though Pippa was comfy and wanted to stay put. After 11 hours of labor, she started getting stressed, and I wasn't dilating, so we went for an emergency cesarean. I could barely breathe as they worked. When she was born, our eyes met briefly before they took her away to be looked at.
The next day I got to see her. I am a lightweight, so the pain relief made it such a blur. I cried every time someone came and said hello, but she was here and doing okay. Her case wasn't so garden variety and more severe, but okay. She was on high-frequency ventilation, which made her whole body shake, along with nitric and more medicines than I could name. You learn so much in those first few days. It's so much to wrap your head around. But we clung to the smallest things people said that gave us hope. She had surgery on day 8, which went well. A patch was put in, her liver and most other organs were put in the right place, and the surgeon said he didn't foresee any issues arising.
Everyone always said the first couple of days are rocky. It's still a trigger for me, the word "rocky," and right they were. Pippa had episode after episode. She was saturating down into very low figures. We got a call early one morning because Pip was doing very poorly. She looked so ill when we got there, not the pink baby we had seen. The decision was made to put her on ECMO. Not something they often did for babies there, but she had shown enough fight. We left for the procedure and got locked out of our hotel room! So funny now, of all the days the world chooses to play tricks, I thought we would have had enough that day. We got a call saying she was doing okay, and they wanted to wait since she may not actually need to go on ECMO. We came back to the hospital, and she had a head ultrasound. She then had her closest call. She turned blue, screens flashing lowest numbers, as many people as could fit working on her. They then said, "Yeah, looks like she just proved she needed ECMO."
So it happened, and it was hard. A few more issues came up. She wasn't doing well, and they were about to do the last thing they could do. Luckily, it worked, and she pulled through. After ten days, she came off ECMO. She finally lost all the fluid she had been overloaded with and from there, she got stronger and stronger. She stopped needing all her support one by one. High frequency to conventional ventilation, PD catheter was gone, chest drains were gone, one by one the medicine tower got smaller and tube by tube it all went away. The most satisfying decluttering you'll ever do. We held her for the first time at five weeks. She was extubated at eight, and we came home at 15 weeks. Crazy to put that into one sentence. So much happened, we changed so much, but Pippa did it, defied the scary odds. We will forever be grateful we got to bring her home.
She is now seven months, and you would not have the slightest clue just from looking at her that she went through so much. Not too keen on oral eating yet, but we hope to wean her soon. The journey was challenging. It will always be difficult to remember, but I wouldn't change it. She is such a delight. We love her so much, and we are honored that she is among so many other Tiny Heroes.