Reuben's Story, 37 Weeks and Over

After a textbook pregnancy and a few days before her due date Miracle Mum Jessi went into labour late at night. Of her three labours this was the smoothest and easiest and by the morning baby Reuben was born. Jessi reflects on how her text-book birth turned into a testing journey.

“We were transferred to the maternity ward, I showered and then almost right away someone came to collect Reuben for his heel prick and hearing tests, as we were hoping to be discharged the same day. He was gone for quite an amount of time, longer than usual and then a team of doctors came into see us and tell us that he had to be transferred to NICU.

They had suspicions of a hernia in his testicle that would need immediate surgery, he had one leg longer than the other, and they were concerned about what looked like a rash on his skin. He was started on a range of antibiotics to cover things like meningococcal while blood tests were sent off and transferred to the children’s hospital just over an hour away. I was discharged four hours after birth. However, I couldn’t be admitted with him or stay nearby as we were classed just out of the ‘country’ zone.

When we arrived at the NICU we weren’t updated with much information until the next day. In the meantime, he had every possible test performed including an array of ultrasounds and brain scans. There were teams of doctors coming through from infectious disease, dermatologists, and various other departments. We were then told he didn’t need surgery, but it was days before tests came back and they determined his ‘rash’ wasn’t infectious and was a dermatologist issue.

We quickly learned a lot of medical terms and conditions that were being discussed and struggled with the lack of control over our own baby when we didn’t agree with some of the decisions they made. We fought with doctors a lot from this point to try and be transferred back home, as the main concern from that point was his feeding not being established. I would start to get a routine through the day of him feeding larger amounts and more often, only for each night when I went home nurses to put a feeding tube back in.

We didn’t get much support from anyone and with two other kids at home and it was a very difficult week that made me feel deeply for parents who had babies in NICU longer term. Eventually, after pushing for days, we were transferred back to our local hospital to stay together, but they discharged us within the same hour of being admitted.

We still have lots of follow up appointments and Reuben has been diagnosed with a skin condition called DCMO (diffused capillary malformation with overgrowth). It’s quite rare and none of the doctors or dermatologists we’ve met have seen it before … which makes it hard.

In all honesty, we didn’t have the best NICU experience and it was certainly unexpected and a roller coaster of emotions. It gave me so much compassion and really opened my eyes to what parents must go through when they have babies in the NICU. I’m not sure my heart would have taken what some parents go through and it was a big factor for us deciding our family is complete with three children.

He is now a happy two and a half year old who likes to give his older siblings a run for their money."

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