My baby’s PPHN diagnosis – Aimee’s Photo Blog

Through pictures of their time on the NICU, Aimee tells the story of her neonatal journey after her son Jax, born at 37 weeks, was diagnosed with Persistent Pulmonary Hypertension.

During my pregnancy, my baby boy, Jaxon, had been measuring as quite small for his dates but there weren't any concerns about his development. At 37 weeks, it was decided that I would be induced and my delivery was totally normal. Everything went smoothly during the four-hour labour, and I just had gas and air as pain relief. As soon as he was born, weighing 5lbs 1oz, I was able to hold him on my chest and he looked so perfect.

But then he started grunting and seemed very lethargic, so he was taken to the NICU where they could keep an eye on him. My partner, Dan, and I felt completely lost, numb and scared. All we wanted was to hold him and love him like we had done with our other children. Dan didn't even get a cuddle before Jax was whisked away.

Overnight, he took a turn for the worse. His blood pressure kept dropping dangerously low, until it actually crashed and he needed to be ventilated. My partner and I were in total shock. The staff were absolutely fantastic, though, and so supportive. They explained what all the machines did and showed us how to hold Jax to comfort him.

They talked us through the plan for treating Jaxon, all the medication he was on and how it worked. The staff gave me muslin squares - I kept one close to my skin and then gave it to Jax so he could smell I was near. Knowing he could smell I was close even though I was unable to be there all of the time brought me a lot of comfort.

Jax wasn't responding to treatment though. So, the decision was made to send him to a higher level unit about an hour and a half away. We had to travel separately and it was terrifying not knowing what was happening to him while we were apart.

Once at Derriford Hospital, Jax was diagnosed with PPHN (persistent pulmonary hypertension of the newborn) which is where the blood continues to circulate in the same way it did while the baby was in the uterus instead of adjusting to being out of the womb. The doctors suspected he might have sepsis as well. We were told that he was seriously ill but they would do their best for him, which they definitely did. He was given two different kinds of antibiotics for the sepsis and he had special breathing equipment to help with the PPHN.

The doctors and nurses not only took excellent care of him but also supported us throughout our time on the unit. We especially appreciated being asked if we'd like to be involved in his care and their guidance on what to do. My partner Dan got to feed Jax using the NG tube and change his nappy.

We even got to cuddle him once he was more stable. Kangaroo care time was an absolute blessing. Being able to help look after and comfort him made us feel more in control.

We were also able to stay in a room on the neonatal unit in Derriford. We were given food vouchers and were really well looked after. We got to meet and chat with the other families who had had babies on the unit and it was comforting to be able to talk and share our feelings.

We were in neonatal care for a total of ten days and over that time, Jax had a complete turnaround. We were moved back to our local hospital, Trelisk, where he went from strength to strength.

I was given a side room on the ward and had Jax in with me for three nights before we were able to go home. Our older children were finally able to come in and meet their little brother and give him the cuddles they had been looking forward to.

Before we could go home, the medical team wanted to make sure Jax could breastfeed properly. I was very grateful for that as I was very nervous after him being so poorly and I felt like I really needed that support to get started with breastfeeding. I appreciated having that time to readjust and get used to having another little boy before we went home.

Jax is now a thriving, bouncy one year old and every day he surprises us with something new. He has hit all of his milestones, and then some! We could not be more grateful to the staff at both the Royal Cornwall Hospital and Derriford. Although the situation felt so bleak at the time, they made our experience a positive one by supporting us and saving our little boy's life.