Benjamin’s Story

Benjamin's Story

Benjamin is my fourth child - my fourth boy, to be exact. He is currently just shy of 10 months old, and had his cleft palate repaired this week. His courage and determination since his birth, and specifically in the last few days, has led me to want to tell you his story, and to let you all know that Pierre Robin varies VASTLY in severity - it isn't all doom and gloom like some sites would have you believe!

Due to previous complications, my third son, Lewis, was stillborn at 36 weeks. When we found we were expecting Benjamin just 6 months later, it was a huge shock and mentally a very difficult pregnancy to deal with. When I realized I would have been 7 or 8 weeks pregnant during an operation to remove my gallbladder, despite numerous pregnancy tests, I was shocked and surprised - this baby was already a survivor! I was induced at just over 37 weeks, and just over 6 hours after my waters broke, Ben was delivered straight onto my chest for a cuddle. During our cuddle, the nurses had to do a shift change, and when I was finally ready to get Ben dressed and get myself cleaned up, we were moved to a private room.

Benjamin was placed feet-to-foot in his hospital cot, laid on his back. Immediately, my husband and I noted his noisy breathing - like a heavy snore. Within 30 minutes or so my baby's hands and lips were going blue, like he was struggling to breathe. He ignored both breast and bottle, and so a doctor was called to examine him 3 hours later. Benjamin was taken to the Special Care Baby Unit. There, he was laid on his front, warmed up in the "Hot Cot," and given some blue light for jaundice. We were told that night that he just needed a little help, and he'd be ready to come home in the morning.

My husband and I visited the unit as soon as we could the next day and were met with our son laying on his front with a naso-gastric tube in, a monitor on, and nurses buzzing around him. When I reached over to him, as if to pick him up for a cuddle, a nurse stopped me and told me I should wait for a doctor. Scared isn't the word!! The paediatrician was called for and, after she asked us both to sit down, delivered this sentence;

"Benjamin has a cleft of the soft palate. We are investigating the possibilities, but it seems like your son has a condition called Pierre Robin Sequence. We are doing all we can to confirm the diagnosis, and someone from the Cleft Team will be here to speak to you shortly."

So many questions went through my head at that point. How long would my baby be in hospital? What was this condition? Was it life-threatening? How would it affect him? Why couldn't I pick up my son and cuddle him? Why wasn't this discovered 14 hours ago when he was born? It turns out that in the aftermath of the birth, my cuddles with Ben coupled with the shift change meant that the initial post-birth checks on my son hadn't been carried out. This is usually when a cleft palate would have been discovered.

The initial meeting with the cleft nurse was somber. His cleft palate, coupled with a small lower jaw and a posterior tongue position meant that Ben did indeed have Pierre Robin Sequence. Nobody was very encouraging or hopeful that Benjamin was going to recover from his problem very quickly. We were basically told by a SCBU nurse and by our cleft nurse during that first meeting that Ben would be kept on the unit for several WEEKS - possibly up to 12!! - and that he would have to be exclusively tube fed for up to the first 4-6 months of his life. We were told that Pierre Robin babies didn't like to be handled much, and that breathing difficulties due to his tongue position would be our biggest concern when he was eventually allowed home. Also, we were told of the high percentage of ear infections a cleft child may have and the possible loss of hearing as a direct result of that. Glue ear was also mentioned, along with the prospect of grommet insertion to counter any hearing loss from that. Not the most inspiring conversation, I can tell you!

Benjamin surprised everybody in the days and weeks that followed. His oxygen saturations were perfect within 24 hours of being on the ward, and he was feeding well down his tube. Five days after his birth, he was allowed home.

I was set on breastfeeding Ben right from the start and when I was told that would be almost impossible, I decided to carry on expressing. I figured that my milk would at least protect him a little bit from the ear infections we were told he would get. I was loaned a double pump, first from the SCBU, and then from CLAPA. I expressed every 3 hours at first, but the cycle of pump, feed, sterilize meant that my sleep was almost non existent and the quality of time I had with my older sons was reduced considerably. I gave up expressing after 17 days - it was just too much to handle.

The cleft nurse visited our home weekly and, when she realized how well Benjamin was doing - and how miserable he was becoming during a feed because he couldn't suck anything - she allowed us to try giving him a little of his feed through a MAM squeezy bottle before continuing with a tube feed.

21 days after he was born, Benjamin had his feeding tube removed, and the nurse told us that he no longer had an abnormal tongue position that would stop him having very enjoyable cuddles. From that moment, I was able to cradle him normally while he fed, and I could look into his eyes while he was in my arms - one of the biggest things that I felt I'd been cheated out of.

An appointment was made to see the paediatrician at the Special Care unit about 2 months after Ben was born. At this appointment, the doctor checked Ben's growth and development and, as a matter of routine, asked if some bloods could be taken to check for any other abnormalities. A week later, we received a phone call telling us that the results had come back clear - "Benjamin is a perfectly normal, healthy little human male!" Knowing that there were no other related syndromes or problems took a huge weight off my shoulders and helped me concentrate on my son, rather than on his medical condition.

Ben had his formula changed when he was 4 months old as the SMA we had him on wasn't high enough in calories for him - the effort he used up in trying to suck his bottle was negating the energy in his food. He was taking a 7oz bottle in 15-20minutes. He started to gain weight with the Infatrini at a steady pace and has carried on doing so to this date!

Weaning was.....colourful! There was nasal regurgitation from the offset which was scary at first, but we soon realized it was more distressing to us than it was to Benjamin. He quite liked the sneezing, in fact! (I cannot recommend splash mats enough when weaning a cleft baby, by the way!)

By 6 months old, Ben's jaw had almost completely caught up with the rest of his face.

Because of his PRS diagnosis, Ben's palate surgery was held back until he was just over 9 months old. We were told all the way along to pack for a weeks stay in hospital. Our cleft nurse advised us that Benjamin would probably need a NPA - naso-pharyngeal airway - and may also need to go up to the High Dependency Unit after surgery. Nearly everyone else agreed that he wouldn't be allowed home for about a week after his operation. At the pre-operation visit, Ben also had a hearing test. Although the results were still pretty good, there was an obvious dip in some of the results and so the insertion of Grommets would go ahead at the same time as the cleft palate repair.

We arrived at the hospital on the following Tuesday night, Ben had his operation on Wednesday morning....and on the Doctors rounds on Thursday night, we were told we were allowed home! He had taken over 14 ounces of milk and even some solid food. His drip was removed, his medication was reduced down to only paracetamol and ibuprofen, and he is doing incredibly well.

When we were first allowed home after Ben was born, the limited information and personal stories about PRS amounted to quite a depressing bout of research. The general summary at the time was a lot of tube-feeding, worrying about airway obstruction, and not being able to cuddle the affected child. Benjamin has blown that all out of the water, reducing a 3-month stay in the SCBU to 5 days, bringing a 6-month tube feeding plan down to three weeks, then being discharged from the hospital 27 hours after cleft surgery...he truly has been amazing! He is such a happy child too - always smiling, even immediately after he woke up from his op.

Although this will not be applicable to everyone, and although many parents and children suffer the complications of Pierre Robin that our nurse initially discussed with us, every child is different, and every case of PRS is as individual as the child it affects. I wanted to share Benjamin's story with you all to add another positive experience to the CLAPA website, and hope that his recovery will add something light to what can seem like an otherwise bleak diagnosis.