Freddies Journey at Great Ormand Street Hospital.
Donation protected
So many people have been touched by our story, we wanted to share it with everyone..
It was October 2018 and Nathan and me had recently found out we were expecting a baby.... After suffering a heartbreaking "silent miscarriage" the previous year... We were overwhelmed but understandly nervous... I was reassured that I felt very sick, and the smell of certain things made me want to vomit!! We went for our 12 week scan, excited to see our little bean. Whilst in there, the sonographer picked up on a issue with the baby. She explained that there was a large mass in the baby's stomach area that shouldn't be there, she put it down to a girl fetus with a swollen ovary and told us not to worry, but suggested we went to see a fetal medicine expert at a different hospital... In week 16 of pregnancy we were under a lovely consultant of fetal medicine who scanned me again. He agreed that yes there was a very large mass considering the small size of the baby, and examined in more detail. He believed it to be the bladder of the baby, and told us he thought it was megacystis, typically babies with a missing chromosome (Edwards, Patau and Downs syndrome normally) sometimes present this abnormality.. He said it was serious and our world crumbled. We couldn't lose 2 babies in just over a year... He advised us to consider our options and went into detail about each chromosomal issue.. We had 3 options.. Either terminate the pregnancy, continue with the pregnancy and never know exactly what is happening with our baby, or thirdly having CVS testing done which will confirm whether or not our baby has a chromosome defect. Defect is such a horrible word, it was our baby, and no matter what was "wrong" with them, we would fight the whole way to bring this baby into the world. Our consultant agreed with us, but warned us to prepare for the worst. That same day, we agreed to have CVS testing which would confirm for definite what was wrong with our baby. Sadly, if the baby had a chromosome defect they weren't at a postion to be able to help us, more often than not babies with the above mentioned defects don't survive pregnancy with megacystis, so it would be down to us to continue the pregnancy until our baby sadly died, or to terminate. The CVS was performed and we had an anxious 3 week wait. A week before New Year's Eve, I got a call to say that he didn't have Downs, Edwards or Patau and the other chromosomes they were testing on would be back the following week.
On New Year's Eve, whilst I was at work, the secretary called me, we found out our baby was a BOY and he had NO chromsone issues at all....
More scans showed that there was a blockage somewhere and our son couldn't pass urine, increasing his bladder in size so we were reffered to Birmingham hospital to see a specialist who had previously done a study on babies with these problems.... He said no, our baby doesn't have megacystis which was such a relief but instead said he had a urachal cyst with a connection to the babies bladder. Meaning.. He was able to pass urine okay, but the cyst on his umbilical cord (the same mass seen at 12 weeks) was growing each day filling with urine, whilst some still going into the womb keeping the amniotic fluid at a safe level.
Fortnightly scans at our local hospital Norfolk and Norwich took place, all his other organs were developing and functioning perfectly... He was fighting, and so were we!!
26 weeks into pregnancy, the diagnosis was changed, whilst he still may have had a cyst, they also now believed he had his bladder outside of his body, they described it as a floppy sac, and had it of been a cyst they wouldn't expect it to be floppy..
All we could do was wait, pray for the best, and watch our little solider get stronger each day... The frequent scans were reassuring, our consultant was so so thorough, reassured us at every scan, answered any concerns we had, the biggest one we wanted answering was "Is he going to be okay" which no one could say... Every single day was a worry, not knowing from one minute to the next if he would survive, whether it would all be to much for his little body...
Our baby was a little monkey however, he was breach which made the scans difficult and time consuming, but we were never made to feel bad about it, and it took however long it took until they had seen what they needed too..
Steriod injections at 36 weeks, planned c section for 37 weeks, and who knows what happens after that...
Wednesday 8th May, 7am, we made our way to Norfolk and Norwich hospital... Nervous, scared, excited, so many emotions... But finally the day we could meet our son was here!!
I was second on the list luckily and the obstrician came to see me and explained that he would need to be taken to the NICU unit immediately after birth and a plan put in place..
The operation went okay, minutes felt like hours... But eventually, at 1046am, weighing a lovely little 6lb 4oz our son was delivered safely. My blood pressure dropped very quickly so I was only able to hold him for a few seconds, luckily Nathan had a cuddle for a minute or two..
Freddie Ronnie Ray was in the world!!! What was wrong him with him was unknown but the main thing was, he was alive and safe..
I was taken to recovery, Freddie was taken to NICU and it was worse than previously thought. He had his bladder, bowel and intestine outside of his stomach and the hospital had never seen this before, ever! I presented signs of sepsis so I couldn't go and see him, but was kept upto date with everything by numerous specialists. It was decided the same day that he would need to to Great Ormand Street for specialist care as this was a very rare problem and they were best to deal with it... We were informed he would need immediate surgery, so he was on a saline drip to keep him hydrated, not to mention 3 cannulas, heart monitor, he had a catheter inserted so as not to make the bladder any bigger, and another catheter in his abdominal wall incase the penile one failed...
Freddie was taken by GOSH transport Thursday afternoon, and Nathan and myself traveled with my mum there. We weren't both allowed to travel with him sadly due to the amount of specialists he had to have travel with him.
Upon Freddies arrival to GOSH, who arrived a few minutes before us, we were met by a team of nurses and urology surgeons. The specialist told us that he did indeed have his bladder bowel and some of his intestine outside of his body, and that he hadn't developed a belly button which caused a collapse of the stomach wall... Also, he was quite jaundice too.. Surgery was the only option for him, and after great lengthy discussions we signed the consent form and he was going to theatre the following day. At 2pm he was taken to theatre. Never ever felt time stand still before. At not even 48 hours old our son was under general anesthetic and likely to be down in surgery for a few hours, we kept checking back in to see if there was any news but no, nothing yet....
Almost 6 hours later, he was out of surgery and in recovery. We rushed immediately to him and was met by the smallest but strongest little dude we'd ever seen.... We held his tiny hands and waited by his side and went back to his room on the Panther ward. The operation was a complete success.. He was all put back together again and the incision he had been left with was incredible!! So small, and neat, and he even got a designer belly button custom made!
His catheter came out and he could wee properly, his bowel functioned fine and he had dirty nappies, but the supra pubic catheter was left in place, just in case. He was under the UV light for his jaundice, had morphine on drip, cannulas for fluids and medication, sensors on his feet, and a nasal tube was put in for feeding...
Slowly but surely he got stronger, despite loosing almost 14% of his birth weight he still fed, he put weight on slowly, and we took over the care ourselves, being supported at all times by the staff who encouraged us to do this too!!
After a long 3 weeks in GOSH he no longer needed that level of care, and we were sent to Norfolk and Norwich again for transition care. We arrived Sunday evening, but Monday evening we were discharged home to be a family. As much as we appreciated the help and support there wasn't any help they could give us, so considering Freddie hadn't met his brothers or sisters, his aunties or Uncles we were so pleased to be back at home, with our son, a memory we never thought we'd have.
We returned to GOSH several times, for a MCUG which tests bladder function of which his works fine, then the most perfect moment was when he had his SPC catheter taking out. For the first time in 6 weeks our boy was finally tube and wire free!!
If you're lucky enough to know Freddie, you will now what a character he is. Despite everything he's been through which is more than most adults, he smiles constantly, he loves his cuddles and more so recently at now 5 months old he loves his puree foods!!
We go back for the final time we hope, next month. Just to review what's happened and if there's anything else that's needed, however we're fairly confident he will be discharged..
Our story has touched the hearts of everyone who knows us, and even strangers we speak too have said he's a very special little boy, and he is. We are so privileged to he his parents and he will always know what a miracle he is.
We are looking to raise money for GOSH, no words will ever be able to say thank you for what they've done for Freddie and us, it really is an incredible place with a whole team of hero's who deserve every ounce of recognition they get. They've given us our son, a healthy baby who now has no problems.... If you can donate anything, anything at all, please do, this is our way of saying thank you and we would love to present them with the money on our trip next month.
Thank you so much for reading
It was October 2018 and Nathan and me had recently found out we were expecting a baby.... After suffering a heartbreaking "silent miscarriage" the previous year... We were overwhelmed but understandly nervous... I was reassured that I felt very sick, and the smell of certain things made me want to vomit!! We went for our 12 week scan, excited to see our little bean. Whilst in there, the sonographer picked up on a issue with the baby. She explained that there was a large mass in the baby's stomach area that shouldn't be there, she put it down to a girl fetus with a swollen ovary and told us not to worry, but suggested we went to see a fetal medicine expert at a different hospital... In week 16 of pregnancy we were under a lovely consultant of fetal medicine who scanned me again. He agreed that yes there was a very large mass considering the small size of the baby, and examined in more detail. He believed it to be the bladder of the baby, and told us he thought it was megacystis, typically babies with a missing chromosome (Edwards, Patau and Downs syndrome normally) sometimes present this abnormality.. He said it was serious and our world crumbled. We couldn't lose 2 babies in just over a year... He advised us to consider our options and went into detail about each chromosomal issue.. We had 3 options.. Either terminate the pregnancy, continue with the pregnancy and never know exactly what is happening with our baby, or thirdly having CVS testing done which will confirm whether or not our baby has a chromosome defect. Defect is such a horrible word, it was our baby, and no matter what was "wrong" with them, we would fight the whole way to bring this baby into the world. Our consultant agreed with us, but warned us to prepare for the worst. That same day, we agreed to have CVS testing which would confirm for definite what was wrong with our baby. Sadly, if the baby had a chromosome defect they weren't at a postion to be able to help us, more often than not babies with the above mentioned defects don't survive pregnancy with megacystis, so it would be down to us to continue the pregnancy until our baby sadly died, or to terminate. The CVS was performed and we had an anxious 3 week wait. A week before New Year's Eve, I got a call to say that he didn't have Downs, Edwards or Patau and the other chromosomes they were testing on would be back the following week.
On New Year's Eve, whilst I was at work, the secretary called me, we found out our baby was a BOY and he had NO chromsone issues at all....
More scans showed that there was a blockage somewhere and our son couldn't pass urine, increasing his bladder in size so we were reffered to Birmingham hospital to see a specialist who had previously done a study on babies with these problems.... He said no, our baby doesn't have megacystis which was such a relief but instead said he had a urachal cyst with a connection to the babies bladder. Meaning.. He was able to pass urine okay, but the cyst on his umbilical cord (the same mass seen at 12 weeks) was growing each day filling with urine, whilst some still going into the womb keeping the amniotic fluid at a safe level.
Fortnightly scans at our local hospital Norfolk and Norwich took place, all his other organs were developing and functioning perfectly... He was fighting, and so were we!!
26 weeks into pregnancy, the diagnosis was changed, whilst he still may have had a cyst, they also now believed he had his bladder outside of his body, they described it as a floppy sac, and had it of been a cyst they wouldn't expect it to be floppy..
All we could do was wait, pray for the best, and watch our little solider get stronger each day... The frequent scans were reassuring, our consultant was so so thorough, reassured us at every scan, answered any concerns we had, the biggest one we wanted answering was "Is he going to be okay" which no one could say... Every single day was a worry, not knowing from one minute to the next if he would survive, whether it would all be to much for his little body...
Our baby was a little monkey however, he was breach which made the scans difficult and time consuming, but we were never made to feel bad about it, and it took however long it took until they had seen what they needed too..
Steriod injections at 36 weeks, planned c section for 37 weeks, and who knows what happens after that...
Wednesday 8th May, 7am, we made our way to Norfolk and Norwich hospital... Nervous, scared, excited, so many emotions... But finally the day we could meet our son was here!!
I was second on the list luckily and the obstrician came to see me and explained that he would need to be taken to the NICU unit immediately after birth and a plan put in place..
The operation went okay, minutes felt like hours... But eventually, at 1046am, weighing a lovely little 6lb 4oz our son was delivered safely. My blood pressure dropped very quickly so I was only able to hold him for a few seconds, luckily Nathan had a cuddle for a minute or two..
Freddie Ronnie Ray was in the world!!! What was wrong him with him was unknown but the main thing was, he was alive and safe..
I was taken to recovery, Freddie was taken to NICU and it was worse than previously thought. He had his bladder, bowel and intestine outside of his stomach and the hospital had never seen this before, ever! I presented signs of sepsis so I couldn't go and see him, but was kept upto date with everything by numerous specialists. It was decided the same day that he would need to to Great Ormand Street for specialist care as this was a very rare problem and they were best to deal with it... We were informed he would need immediate surgery, so he was on a saline drip to keep him hydrated, not to mention 3 cannulas, heart monitor, he had a catheter inserted so as not to make the bladder any bigger, and another catheter in his abdominal wall incase the penile one failed...
Freddie was taken by GOSH transport Thursday afternoon, and Nathan and myself traveled with my mum there. We weren't both allowed to travel with him sadly due to the amount of specialists he had to have travel with him.
Upon Freddies arrival to GOSH, who arrived a few minutes before us, we were met by a team of nurses and urology surgeons. The specialist told us that he did indeed have his bladder bowel and some of his intestine outside of his body, and that he hadn't developed a belly button which caused a collapse of the stomach wall... Also, he was quite jaundice too.. Surgery was the only option for him, and after great lengthy discussions we signed the consent form and he was going to theatre the following day. At 2pm he was taken to theatre. Never ever felt time stand still before. At not even 48 hours old our son was under general anesthetic and likely to be down in surgery for a few hours, we kept checking back in to see if there was any news but no, nothing yet....
Almost 6 hours later, he was out of surgery and in recovery. We rushed immediately to him and was met by the smallest but strongest little dude we'd ever seen.... We held his tiny hands and waited by his side and went back to his room on the Panther ward. The operation was a complete success.. He was all put back together again and the incision he had been left with was incredible!! So small, and neat, and he even got a designer belly button custom made!
His catheter came out and he could wee properly, his bowel functioned fine and he had dirty nappies, but the supra pubic catheter was left in place, just in case. He was under the UV light for his jaundice, had morphine on drip, cannulas for fluids and medication, sensors on his feet, and a nasal tube was put in for feeding...
Slowly but surely he got stronger, despite loosing almost 14% of his birth weight he still fed, he put weight on slowly, and we took over the care ourselves, being supported at all times by the staff who encouraged us to do this too!!
After a long 3 weeks in GOSH he no longer needed that level of care, and we were sent to Norfolk and Norwich again for transition care. We arrived Sunday evening, but Monday evening we were discharged home to be a family. As much as we appreciated the help and support there wasn't any help they could give us, so considering Freddie hadn't met his brothers or sisters, his aunties or Uncles we were so pleased to be back at home, with our son, a memory we never thought we'd have.
We returned to GOSH several times, for a MCUG which tests bladder function of which his works fine, then the most perfect moment was when he had his SPC catheter taking out. For the first time in 6 weeks our boy was finally tube and wire free!!
If you're lucky enough to know Freddie, you will now what a character he is. Despite everything he's been through which is more than most adults, he smiles constantly, he loves his cuddles and more so recently at now 5 months old he loves his puree foods!!
We go back for the final time we hope, next month. Just to review what's happened and if there's anything else that's needed, however we're fairly confident he will be discharged..
Our story has touched the hearts of everyone who knows us, and even strangers we speak too have said he's a very special little boy, and he is. We are so privileged to he his parents and he will always know what a miracle he is.
We are looking to raise money for GOSH, no words will ever be able to say thank you for what they've done for Freddie and us, it really is an incredible place with a whole team of hero's who deserve every ounce of recognition they get. They've given us our son, a healthy baby who now has no problems.... If you can donate anything, anything at all, please do, this is our way of saying thank you and we would love to present them with the money on our trip next month.
Thank you so much for reading
Organizer
Roch Earrye
Organizer