Spina Bifida and Hydrocephalus no match for ‘happy little soul’ Romi | News

Spina Bifida and Hydrocephalus no match for ‘happy little soul’ Romi

Romi as a baby in hospital with a bandage over her head

After being diagnosed with Spina Bifida and Hydrocephalus, baby Rominever let her illness hold her back and is now doing well as she approaches her first birthday, thanks to the team at Birmingham Children’s Hospital.

During Kirsten's 20-week gestational scan, her baby Romi was diagnosed with Spina Bifida, a condition where a baby’s spine and spinal cord don’t develop properly in the womb, causing a gap in the spine.

At the same scan, they also discovered Romi had Hydrocephalus, a condition where fluid accumulates in the brain, enlarging the head and can cause brain damage. 
Five hours after Romi was born, she was then transferred to Birmingham Children’s Hospital for closure surgery for her Spina Bifida. 

Romi recovered well after her closure surgery, but when she was 11 daysold, she had a CT scan tomonitorthe Hydrocephalus, where the doctors decided Romi needed a shunt fitted. 

Romi as a baby having a MRI scan at Birmingham Children's Hospital

Mum, Kirsten, from Norton Canessaid: “We had so many mixed emotions about this. Romi was in surgery for an hour - it was a very quick procedure and Mr. Pepper, who inserted the shunt, was so friendly and took the time to explain everything to us.

“They brought round a shunt for us to have a look at and we discussed everything we needed to know and what to look out for. 

“We left the hospital feeling confident and comfortable enough to contact the relevant people if we ever felt concerned.”

After Romi had her shunt fitted, she spentfourmonths at home with her parents recovering. Sadly, they noticed she was sick a lot and were concerned there was an issue with the shunt, so they decided to bring Romi back. 
Kirsten said: "Within four hours of arriving at A&E, Romi was in surgery with a Shunt blockage. 
She was in surgery for a little longer this time, and our anxieties definitely grew as parents, wondering what was going on.

“After an hour and a half, Mr. Gallo came round and explained that Romi’s shunt had been blocked and the catheter was completely blocked off, but they had changed some of the parts, flushed them through and everything was working fine now.

Romi as a baby on a ward asleep

“When Romi returned to the ward, it was hard. She was older and more aware of things, she wasn’ta little newborn who slept 99% of the time, she wanted to sit up and look around and was in pain. 

“The staff on Ward 10 were amazing and really helped us get through this hard time together; we have always felt well supported by Birmingham Children’s Hospitalin being parents to a child with additional needs and can’t thank them enough really.” 
Sadly, thatwasn’tthe last time Romi would have to visit the hospital, as only a few months later, her parents noticed a small lump at the bottom of her shunt scar.

After visitingBirmingham Children’s Hospital and having a series of tests and scans done, they decided it was best for Romi to have her third surgery to rule out any infections.

Kirsten commented: “We were devastated as parents that we were here again with potentially another shunt malfunction. Romi showed no signs of anything being wrong, and wedidn’tbelieve anything was going on with the shunt, we thought this surgery would happen, and there would be nothing wrong with her shunt.
How wrong were we! Mr Rodrigues emerged after nearly six hours in surgery.

Romi on the ward playing with some toys

Romi had a huge infection in and around her shunt and post-operative meningitis due to how severe the infection was. We were in shock, wecouldn’tquite believe our happy little girl, with no infection markers, or symptoms that anything had malfunctioned with her shunt was so poorly.” 

Romi then spent another three weeks on Ward 10 as she was treated with several IV Antibiotics, and her parents waited for there to be no sign of any infection before they could go home.

Kirsten added:“ Those three weeks were the hardest to date in our journey with Romi, from the stress of having such a poorly child to juggling older children at home, having time out for your own sanity and trying to manage life was just so stressful.

We will forever be grateful toall ofthe neurosurgical team at BCH and all the staff of Ward10, they have been there for us through it all and I’m sure will continue to be throughout our journey with Romi and Hydrocephalus.” 

Romi as a baby at home laughing

Since her third surgery, Romi has gone from strength to strength and has made incredible progress at home with her parents.

Romi is doing extremely well, she is a happy little soul, so cheeky,determinedand strong-minded , I don’t think she will ever let Spina Bifida or Hydrocephalus hold her back. She continues to improve and amaze us, she’s sitting unaided and learning to army crawl, every day she proves us wrong, and we are so excited to see all the things she will learn over the years that we never thought possible.” 


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