We would like to take this opportunity to share our son's story so far. 
Please do not take any medical advice from this page, it is purely just our experience. 

Miles, is our little soldier and we believe that his story might be able to help other parents going through any of the same issues. I had hoped to find a similar story when we were looking for information as we really struggled to find anything. 

Firstly, Miles is our miracle baby. We tried for eight years to conceive but unfortunately, it just did not happen. After years of going through the IVF process, we finally found out we were pregnant in June 2022. 

We could not have been happier but, this was short lived as I started bleeding almost as soon as we found out. We were told that Miles was attached to the left side of my womb and I had a bleed on the right side. The only thing that gave him a chance of survival was to outgrow the bleed. 

I finally stopped bleeding just before reaching 12 weeks. We thought we were over the worst but, then at our 12 week scan I could tell something was wrong because of the consultants demeanor. 

We were later lead to the fetal specialist department where they explained they believe our baby had something called an omphaloceal. An appointment was made to see the specialist doctor in two days times.

We spent the next couple of days struggling but refusing to give up hope.
Any information or case studies online were not UK based so we found it hard to make any comparison or get correct information. 

The next four weeks were some of the hardest we have ever faced. 

The specialist explained that 60% of baby's who have and omphalocel also have other chromosome defects. Mainly, one of the more serious and we should have the amniocentesis ( It is where they insert a needle into the belly to get a small sample of cells from amniotic fluid, the fluid that surrounds the baby in the womb). 

The specialist wanted to do this, to test if any other chromosome defects where present in our baby's cells. 
The amniocentesis comes with a 1 in 100 risk of miscarriage but she expained that we were at a much higher risk of miscarriage regardless. 

We decided to have the amniocentesis but, wanted to know the sex of our baby first so we could give them a name should the worst happen so arranged a private scan. 

The test results take two weeks to come back. Two weeks has never gone so slow and so fast at the same time. Part of us did not want to know the result. What if it was worse case, then we would be asked to make a decision that no parents should ever have to make. Although, for us personally we knew that we wanted to keep our Baby. 

Two weeks passed and we got the call to say that no other chromosome defects they tested for have been found. To this day it is still such a blur of happiness but knowing our son still has a fight ahead of him. 

The rest of the pregnancy was filled with constant monitoring and appointments with the specialist. I also had daily pessaries so my water did not break early. 

Our care was transfered to Manchester Royal Infirmary where we had a meeting with the specialist. We were told that under no circumstances would they operate on Miles until he was older (at least 3 years old) as it is to risky because the omphalocele contained his liver. Instead he would spend time in NICU where they will get the skin to grow over the omphaloce. 

We were also told that he will be born at 37 weeks via planned cesarean section as to not risk tearing the omphaloce. 

The build up to delivering our son was not easy as they had no beds in NICU but a scan shown there was very high pressure in my womb.

When I finally gave birth to Miles he wasn't breathing. They explained that he was in shock and they then rushed him to the back room where the specialist nurses were waiting. We didn't hear him cry for what felt like a lifetime. 

The nurse's then brought our son to see me and I had never seen anyone more beautiful in my life. 

They then explained that he also has an imperforate anus but, they will be able to explain this better to me later. 

Our Son was lead to NICU and his dad stayed by his side while they settled him but then rushed back to me as I had lost such a large amount of blood in surgery. 

Later that afternoon myself and his dad went to NICU to see our beautiful baby boy. We just spent hours staring at him and holding his hand. 

He had tubes and wires all over him and a breathing mask over his tiny nose. He was not allowed to have any milk as he was unable to poo. The Omphalocele was the size of an apple and it appeared he was struggling to breath because of it. 

We did not want to leave him but knew he was in the best place. 

The next morning the doctors came to my room an explained that they have no option but to operate as Miles has no way of getting rid of waste and will go into toxic shock. They need to create a stoma for him and also atempt to put his liver, bowel and intestine back into his stomach. 

Through tears I signed the consent forms knowing his tiny body would have to overcome major surgery at one day old.

We got to hold him the first time before he went down to theatre and the look he gave me will forever be ingrained in my mind. He looked at me as though he was asking me for help. I held him as close as I could for 10 minutes until the doctor came and said they were taking him down for surgery now. 

He was in surgery for the next 8 hours. Every minute went by so slowly. At 11pm the doctors came to my room and explained that the surgery had been challenging but our little boy was doing OK and back in NICU recovering. 

Miles recovered quicker than we ever thought he would and stayed in NICU for four weeks before we were allowed to take him home. 

They also realised that Miles had two holes in his heart and a heart murmer. 

Whilst there, we learnt everything we needed to know about caring for his stoma and the doctors explained that he will need reconstructive surgery when he is older usually within the first year so they have no memory of the surgery. 

Miles will also more than likely need heart surgery in the future to close one of the hole. 

About 1 in every 5000 children are born with an omphalpcle in the UK each year. 

About 1 in every 5000 children are born with an imperforated anus in the UK each year.

It is rear for babies to be born with both but, that just makes our son even more special. 

Miles, is more than we could ever have hoped for and makes us so proud every day. To look at him, you would have no idea of what he has been through.