‘We worry all the time’ - Family’s struggles after baby son diagnosed with rare condition

Carter Silom-Cross, a seven month old from Great Yarmouth who was diagnosed with a rare condition called Rubinstein-Taybi syndrome, with his father Scott Cross. Picture: Scott Cross. (Image: Archant)

Carter Silom-Cross, who lives with his parents Gema Silom, 33, and Scott Cross, 30, near Stalham, was born in March this year at the Norfolk and Norwich University Hospital, a fortnight before the country went into lockdown, and was diagnosed with Rubinstein-Taybi Syndrome, a rare condition leading to health complications.

The baby boy has a hole in his heart and interstitial lung disease.

His father Mr Cross, who is from Great Yarmouth, said: “Carter spent the first few weeks of his life in hospital. Due to being in lockdown and in the peak of Covid, Carter could only have his parents at the hospital and no other visitors could go to meet him.”

At a few weeks old he was allowed to go home to be with his sister Cody, 5, but was on a feeding tube.

Carter Silom-Cross, from Great Yarmouth, is seven months old and was diagnosed with a rare condition called Rubinstein-Taybi syndrome. Picture: Scott Cross. (Image: Archant)

In September, Carter was struggling to breathe and was rushed to Great Ormond Street Hospital (GOSH), with pulmonary hypertension.

He had an operation on September 30 and was rushed back for an emergency operation on October 2.

Mr Cross said: “It was the hardest and longest emotional day of our lives watching the surgeons put our little boy to sleep and us giving him a kiss not knowing if he would make it not through one operation but two operations as he is high risk due to all his medical problems.

“It is and has been very hard for all off us, even Cody,” he added.

“She gets upset when an ambulance has to come out for Carter and he goes to hospital because she worries she won’t see him for a long time again.

“We worry all the time.”

Mr Cross said he took two weeks off work when Carter was born.

“I was supposed to go back to work but due to Carter needing 24-hour care I could no longer go back to work as I worked away as security and doors in Great Yarmouth,” he said.

The cost of living, along with the three-hour journeys to and from the hospital, are becoming very difficult, he said.

Carter, his parents and sister are currently at home but the seven-month-old has appointments coming up at the NNUH and GOSH.

To donate to the family visit their Just Giving page at www.justgiving.com/crowdfunding/cartersbattle