Our Journey with PPHN (Persistent Pulmonary Hypertension of the Newborn)
Our Hopefilled Journey through PPHN and How We Got Off of Oxygen
If you found this because your newborn has been diagnosed with Persistent Pulmonary Hypertension of the Newborn (PPHN) and you’ve never heard of it before, I’m so glad you’re here. When I first learned about our baby’s PPHN diagnosis, I turned to Google in the hospital, and I was terrified. The outcomes seemed grim, and I struggled to find stories of healthy babies after PPHN.
I want to share our story and, most importantly, the outcome: As I write this, our baby girl is a thriving five-month-old, home and completely off oxygen.
Our Birth Story
When our third child, Lizzy, was born, she needed extra help right away. She surprised us all by arriving at 9 lbs 7 oz and 20 inches. At 39 years old, I was watched more carefully during my prenatal care, including weekly ultrasounds and she always passed with flying colors. Everything always looked great. She was an active baby, kicking and moving so much that I even worried she might be in distress the night before delivery because she was so active.
Because of my age, we decided to induce labor at 39 weeks and 2 days on October 15th. I had previously had two unmedicated births, and I planned for the same experience.
I had never induced, but we started the process at 8:30 am. The only clue with her labor that showed she might need extra help was they saw meconium in my fluid after my water was broken. My doula pointed it out and told me they might want to look after her extra closely right after she was born. Fast forward, to 6:47 pm and she entered the world! After she was born she had trouble breathing and they took her over to suction her out and give her oxygen. This was about 5 minutes and then she was able to come back to me. She ate like a rock star and did a great job, but because of the mech and her need for oxygen, she got to be looked after extra closely.
A Turn We Didn’t Expect
We were at a smaller community hospital without an advanced NICU. Lizzy was monitored and her oxygen levels did not go up as much as her doctor would like. The pediatrician explained that babies like her look like they are doing well, but their bodies are working so hard that later they are in real trouble. He started her on oxygen on October 18th. Instead of being able to check out and go home, we were starting oxygen. We were told that hopefully she would just need this for a little while and we would get to go home soon.
The oxygen came with the constant beeping of the oximeter. We struggled for days trying to find the right amount of oxygen to give her to keep her levels above 90. Different nurses had different ideas. We finally had a very concerned nurse who pushed to get her oxygen up. Once we upped her oxygen amount and she was able to be at 100% for 3 hours it is like it opened up her lungs. She was able to stay in the upper 90s! But she was not ready to go home.
The pediatrician said usually these kids will pull out their oxygen when they are ready and be ready to go home. In his 20 years of practice, he had only sent two other babies home on oxygen. We were a rare family that was going home on oxygen. On the morning we were getting ready to go home, my OBGYN did rounds and was surprised to see us still at the hospital 6 days later.
We did training at the hospital on how to administer oxygen that lasted about 2 hours. There was a mix-up in conversion metrics for how much she should receive. My big tip would be to make sure the measurements you are being sent home on, match what is currently being given. There is a decimal and fraction system when ordering oxygen and they didn’t match. If I didn’t catch it she would not have received the correct higher amount of oxygen.
We were sent home without an oximeter so at least the beeping stopped. Thankfully our neighbor let us use their Owlet. That brought me so much peace of mind. Honestly, she rocked at life while she was on oxygen.
The Weight of a Diagnosis
Around this time, I first heard the term PPHN. A quick internet search led me to terrifying statistics—brain damage, cognitive delays, even high fatality rates. My mind became overwhelmed with worry and my postpartum hormones didn’t help. Would my seemingly healthy baby girl face delays or worse? The fear was overwhelming. It became enough that when my doctor’s office called for a 2-week check-in, I asked to go on medicine to help. I had Post Partum Depression with my second and waited to go on medicine. This time I was going to be proactive and start medicine earlier.
Slow Progress, Small Wins
Lizzy thrived at home—eating well, hitting her milestones, and giving us the sweetest smiles.
We went to her first pulmonologist appointment on Halloween. (The doctor came in dressed as a Ghostbuster being that it was a Children’s Hospital.) He couldn’t determine exactly why she needed oxygen, but when we tried to trial her off in the office her levels went into the 80’s.
He thought she might have infant sleep apnea. Which honestly, did not surprise us since her dad and brothers all have sleep apnea and needed surgery for their oral ties.
The oxygen concentrator became a constant hum in our home, a reminder of the waiting game we were playing.
At one-month-old, we tried an overnight oxygen study. Within 30 minutes, her levels dropped below 90. We had to wait another month before trying again.
Exploring Other Possibilities
During this time, we explored additional avenues:
Craniosacral therapy: Her body worker noted the tension in her lung area. She went to 3 appointments and became less tense. She had so much to say at the appointments. Her being so loud actually helped the bodyworker access different areas and access her. Since she was a baby we could tell her to breathe deep, but a screaming baby breathes deep.
Chiropractic care: Her chiropractor Danielle Stalpp found tightness in her upper body. That improved after adjustments.
Lactation consultant: We met with a lactation consultant and she thought tongue ties were present. (If you are looking for a consultant, The Lactation Network, was a great and easy resource.) Lizzy already had a great latch and was eating well. She was very gassy, which was probably from swallowing air with the oral ties.
Laser Dentist: If you’ve followed along with our mouth stories at all you’ll know we are not new to oral ties. I had planned to get her laser surgery right after birth because it was highly likely she would have oral ties. I just didn’t plan on PPHN.
We set up an appointment with Dr. Bolamperti for an assessment. (Well, we had to cancel the first appointment because of an ER visit due to a fever, but we got an appointment quickly).
He and his wife were AMAZING! They determined Lizzy had a posterior tongue tie, lip tie, and buccal ties. She would definitely benefit from surgery. They usually have babies meet with a care team first, but since she had already seen the bodyworker, chiropractor and lactation consultant she was ready for surgery!!! We were able to get her in the next week on November 26th. The procedure lasted five minutes, and although she was sore afterward, we immediately noticed improved head movement and tongue mobility. She was turning her head with ease and much more than before!!! She continued to explore her new tongue sticking it out day and night.
Pulmonologist: As mentioned earlier we saw a pulmonologist who helped us with overnight studies and reviewed our case. He thought she could have infant sleep apnea and the course of treatment would remain he same with oxygen at home.
Freedom from Oxygen
Following the surgery, we attempted another oxygen trial—this time, she passed! It was Christmas, and I was nervous about removing her completely from the oxygen. We started by taking it off while she was awake.
As her pediatrician at the hospital predicted, one night Lizzy wiggled out of her sleep sack and pulled out her oxygen tube. By December 27th, she was officially oxygen-free!
A Happy, Healthy Baby
Lizzy has absolutely no delays. She rolled early, chats constantly, smiles at everyone, and is thriving in every way.
The fears I had after those initial Google searches did not come true.
We don’t know exactly why she had PPHN. Was it due to severe ties? Possible infant sleep apnea? The meconium? Her larger birth size? All of thee above?
We may never know.
What I do know is that she is here, healthy, and whole. I believe in the power of prayer, the guidance of dedicated doctors, and the miracles of modern medicine.
If you are a parent facing a PPHN diagnosis, I want you to know this:
There is hope. Not every story ends in the worst-case scenario.
I do know many people were praying for her. She did receive healing and is healthy now. No matter what finally helped her I am so thankful for the Lord revealing the next steps to take to get her help. I’m thankful for the attentive doctors and modern medicine. I’m thankful for a healthy baby.
I don’t know what caused her PPHN, but I do know she is doing great now and I wish I had been able to read about another parent who was on the other side of PPHN with a healthy infant.
There is hope. It doesn’t always end in the scariest scenario.
Good Plans:
One song carried me through our hospital stay: “Good Plans” by Red Rocks Worship.
“He has good plans. He has good plans. He has good plans for me, and I will take heart in deserts and gardens.”
Hold onto hope, mama. You are not alone.
