Callum's Story (Pulmonary Hypertension)

On April 8th, we celebrated the birth of our fourth child and first boy, Callum John.

After a high risk pregnancy due to an Incompetent cervix & Cerclage, I gave birth to him at 36 weeks and 4 days. Because we knew Callum was a boy, and knowing my history of early babies (36+ weeks), I knew that he may have more difficulties because of his prematurity.

When he was born, he looked great. He nursed almost immediately. I felt as though a huge weight had been taken off of my chest. Until about two hours after his birth, his nurse and I noticed him grunting. He had a low body temperature, even after being skin to skin with me and warm blankets. She took him from me and placed him under the warmer. She checked his oxygen saturation, and it was only 82%. It should be close to 100%. My heart sank. Something was not right with our little boy.

The nurse took him immediately to the nursery for further evaluation. She came back to tell me his blood sugar was only 23. Much, much too low. A sign he was sick. His blood sugar should be well over 50. He was under the oxygen hood and working very hard to breathe. Once I realized how sick he was, I never left his side. I spent the entire night by his side watching him get sicker and sicker. By morning, everyone agreed it was time to transfer him to Maine Medical Center's NICU.

As the day progressed, he continued to get sicker. His air exchange was poor and the doctors were becoming concerned that he would not be able to continue, so they made the decision to intubate him (place a breathing tube down his throat). Being a nurse and a former nurse in a Pediatric Intensive Care unit, I knew just how sick he was. I knew that there was more to come. And I was right. He was on blood pressure medication for a low blood pressure, and his respiratory status continued to decline even on the ventilator. By the night, he was on an oscillating ventilator and nitric oxide, and we were hearing the words...

Pulmonary Hypertension or Persistent Fetal Circulation or Persistent Pulmonary Hypertension of the Newborn

All I could think of was why. Would our baby be okay. What did I do to our baby. I had lots of guilt. I blamed it on myself and having to have him early, and that my body failed me and him. But the neonatologist spoke to us about pulmonary hypertension and how this was a "big boy disease" and how premature babies do not get this. Not that I was happy that Callum had this, it was a relief that he was sick with a big boy disease. He could have gotten this at 40 weeks. 42 weeks.

After we were reassured that pulmonary hypertension was what he had, we discussed what it was exactly. It's definitely not a diagnosis you hear very often, and a long time ago, babies used to die from this. When Callum was born, he had a very fast descent, in other words, he was born very very fast, and his body didn't have a lot of time to get the fluid out of his lungs. So, he was essentially born with pneumonia, and the pneumonia caused the pulmonary hypertension.

What is persistent pulmonary hypertension (PPHN)

Persistent pulmonary hypertension (PPHN) is also known as persistent fetal circulation. In this condition, a newborn baby's circulation changes back to the circulation of a fetus, where much of the blood flow bypasses the lungs.

Who is affected by persistent pulmonary hypertension?

About one in every 500 to 700 babies develops PPHN. It occurs most often in full-term or post-term babies after a difficult birth, or birth asphyxia (a condition that results from too little oxygen).

What causes persistent pulmonary hypertension?
During pregnancy, the fetal lungs are not used to exchange oxygen and carbon dioxide, so the lungs need less blood supply. The fetal circulation sends most of the blood supply away from the lungs through special connections in the heart and the large blood vessels. When a baby begins to breathe air at birth, this fetal circulation changes dramatically. The change in pressure in the lungs helps close the fetal connections and redirect the blood flow. Now blood is pumped to the lungs to help with the exchange of oxygen and carbon dioxide.
When a baby has lowered oxygen levels or difficulty breathing at birth, these changes may not occur and the baby's circulation returns back to the fetal system with blood directed away from the lungs. The lung pressure stays high. That is why this condition is called persistent pulmonary hypertension.

In Callum's case, his PPHN was caused by a "difficult birth". It's interesting because when you hear about a "difficult birth" you don't hear that it was an insanely easy, rapid labor and delivery for the mother, but for him, it was much, much too quick. So, a fast birth isn't always a healthy birth for a baby. We were relieved to learn on his 2nd day that his pulmonary hypertension was indeed caused by this and not any structural abnormalities in Callum's heart.

Callum was on an oscillating ventilator and nitric oxide for 5 long days. The first 24 hours was very touch and go. Watching our baby slip was so very difficult and knowing that if the nitric oxide and oscillator didn't work, we would be going to Boston for ECMO. But thankfully, he turned responded well to the treatment and by the third day, he started to improve drastically, and started to wean all of his settings. On day 6, he was taken off of the ventilator and actually breastfed that evening. We were told his progress was staggering and the doctors and nurses could not believe the rapid improvement he had.

On day 11, Callum was discharged home from the NICU. He was an amazing breastfeeder much to the amazement again of the medical staff. They told me it would be several weeks before he went home because many babies who have suffered through pulmonary hypertension take a while to "learn" to eat again. Not Callum.

Since then, Callum has been flying high and progressing very well. We pray that Callum does not suffer any long term consequences from his illness as a newborn.

You can read about his first few days here:
Happy Birthday, Callum John
A Very Rough Start