Soft.org Facebook Soft.org Twitter Soft.org Instagram
Soft.org Facebook Soft.org Twitter Soft.org Instagram

Leo Milburn



For most of my life I knew that I wanted to be a mother. Seeing a positive pregnancy test was a dream come true for myself and my husband but soon our nightmare began.  On a Friday afternoon we received a voicemail concerning my blood test results. We knew this was not a good sign and the thought of having to wait a whole weekend to find out the results was unbearable. We went to the hospital on the Saturday to get answers and luckily we did. A doctor informed us we were at high risk of having a child with Trisomy 13 or 18.

Following this news I had many scans which showed a cause of concern for the specialist. Our baby’s heart did not look normal and we were told the heart condition could not be diagnosed until they find out whether our child has a genetic condition. I felt like I had been pushed into making the decision to have an amniocentesis. 

I clearly remember speaking to a midwife over the phone about my results, which left me with a range of feelings. She told me the results were not good but could not give me any clear diagnosis and I would have to wait until the following week to see the consultant. I was left feeling confused, devastated, upset and angry. I thought that the point of having the amniocentesis was to give a clear answer about a diagnosis.

It felt like a lifetime waiting to see the consultant but we still held hope that the consultant would have an explanation for us. Unfortunately this was not the case; the consultant was just as confused as we were. He informed us that he had never seen this type of result before. The results showed that our baby had 52% normal cells and 48% trisomy 13. The unknown was too much to bear at this stage.

We were referred to meet with a genetics team who we hoped could explain the results. We received the news that our baby has mosaic Patau’s syndrome but they could not determine how this would affect our child.

During this rollercoaster ride all the specialists would talk to us about was making a decision whether to terminate the pregnancy. It was the most difficult conversation that myself and my husband have ever had. From all the information that was given to us there seemed to be no hope yet I could sense our child was telling me something. Every day I experienced the joy of our baby kicking and rolling about inside of me. We knew that whatever the outcome our baby was a fighter and I was determined to fight for them too.

Every other week I was in and out of hospital having scans with different specialists. There was no consistency with the information we were given. Within 2 weeks our baby had gone from having a small stomach to no stomach at all. We wondered where a stomach could disappear to! Nothing made sense to us at all and there was still so much negativity about prognosis.

I think one of the hardest talks we had with a consultant was when they wanted us to talk to a hospice about end of life. To us they had already made their mind up that our baby was not going to survive. We were told that our baby was likely to need stomach surgery straight after birth but the consultant said our baby was unlikely to be healthy enough to have the operation.

Throughout the whole pregnancy we felt isolated due to our situation and did not interact with a lot of family or friends. People wondered why I was not having a baby shower and why we had not bought a lot of baby items.

Finally the time came for our little one to arrive. It was decided that I would be induced so that a team of specialists could be at the birth. The plan was for a natural birth but after 2 ½ days of labour I was rushed in the operating theatre for a c-section. Our midwife was an amazing woman; she understood the importance of getting to spend as much time as we could with our child.  The consultant had already told us to prepare for silence as a baby would unlikely cry after birth.

I remember the arrival of our son Leo like it was yesterday. Leo arrived with a loud cry and our hearts just beamed with joy and love. He weighed a very healthy weight of 8.42lbs. I clearly remember looking over at the specialists standing around amazed at how healthy Leo seemed. We were able to have cuddles before Leo was taken to the neonatal unit.

Unfortunately after birth I had a few complications with my placenta and infections yet I was determined to stay strong for my little man. Leo needed a little help with his breathing at first and had a feeding tube inserted. There was no mention about his stomach and he did not need any surgery. Leo had multiple scans and tests to see how everything was functioning. He stayed in this particular hospital for about 10 days and then transferred to our local hospital where he stayed for 5 days.

Taking Leo home was the most amazing yet frightening experience. Leo still had a feeding tube but was a happy little baby. Overall Leo had some health issues including Mesocardia, Sensorineural  hearing loss, Scaphocephaly, Duplex kidney, Polydactyly, Syndactyly, Undescended testes and Penoscrotal webbing. But luckily none of these have been life threatening for Leo. Leo is now 17 months old and is our little miracle. Every day he makes us laugh and smile. Leo is our constant reminder that when life seems hopeless there is always a light that will guide you through.


Created: 05/01/2021 20:32

Back to family-stories

Registered Charity: 1002918 (England and Wales) SC043341 (Scotland). Copyright © 2005 – 2017 SOFT UK. All rights reserved.