Logan B’s Story - Congenital Diaphragmatic Hernia (CDH)

With having two boys at home we were ecstatic to hear the words, “It’s a girl!,” at our gender reveal ultrasound at 16 weeks. Little did we know what our little girl would soon have to endure. It wasn’t until our 20 week ultrasound that my OB came in and wrote down all that was going on with our sweet girl on an index card. “Her heart is on the right side of her chest, her stomach is in her chest, her bowels are up in her chest, and she has a mass on her left lung. No diagnosis, just an index card. I was told I would be transferred to a high risk OB. I walked out of the office feeling like there was no hope for my sweet girl. It was a week later at the high risk ob that we got the diagnosis of left sided CDH, with her liver partially up into the chest cavity and CPAM also on the left side, and from then on our amazing team never lost hope for Logan, although we knew how sick she would be and what long road it would be, we never lost hope. Logan was born via c-section at 37 weeks at Cincinnati Children’s and she was immediately intubated. She lasted only an hour after birth before going on ECMO. She spent 25 days on ECMO and even had her CDH repair and removal of the CPAM on ECMO. But Logan never stopped fighting. She went from ECMO to the oscillator and a few weeks later to the traditional vent. She spent 2 months intubated and then was extubated to high flow.

At 6 months she had her g-tube placed and also a nissen procedure done. Logan spent 10 months on high flow, and was unable to tolerate being weaned below 4L because of her significant pulmonary hypertension and hypoplasia. In December Logan tested positive for Rhino virus. At one point she was on 15L of O2 before needing to be intubated. We nearly watched the rhinovirus take the life out of our sweet girl. After a couple weeks of being intubated the team tried to extubate and she failed extubation, not once, but twice. Finally a week later she was extubated to 9L. And at that point we realized Logan’s lungs needed a break, and a tracheotomy was our best option. So Jan. 10 Logan had her trach placed. Which ended up being the best decision we have ever made, but also our biggest fear just became reality. Obviously not what we wanted going into all of this, but we watched Logan transform developmentally and her spirits lift after getting the trach. We had a happy baby pre-trach, but now she can focus on being a normal baby vs the constant struggle to keep her sats up. 

Now Logan is a beautiful 14 month old baby girl who is finally home with her two older brothers and who is excelling developmentally. Sure she’s got a few added accessories, but our baby girl is home and she will soon outgrow all of her accessories! We watched our daughter go through more in her first year of life than some people do in a lifetime, but yet she never let CDH dull her sparkle. There is finally a light at the end of the tunnel. The journey wasn’t easy but it was well worth it. If I could give any advice to CDH families it would be to stay positive and no matter how hard it may be, never lose hope. And to reach out for support, every story is different, but we’ve all been through the emotional rollercoaster. Looking back at the journey we cried many tears, both sad tears and happy tears, but every tear was worth it to see Logan home and THRIVING! Now we’ve got the happiest little lady in all the land who has fought the good fight and who is stronger than CDH!