Ivory

November 30th 2013, I booked in to have a private 4D scan in Mothercare, Wolverhampton, I was so excited, naturally I didn't ever think my scan would come back saying there was something wrong. So there I was all excited to see my baby on the screen and they told me I was having a little boy, which was amazing given I had just had a little girl, Luvleigh, in the April. A boy would complete me, one of each I thought! But she was keen to keep looking at his face on the screen and straight away I knew what she was looking at, you could see shadowing by his mouth. I said to her he has a cleft lip doesn't he?  She couldn't confirm this as she was just a sonographer and not a doctor, so she rang Newcross hospital for me to arrange an emergency appointment with the consultant in fetal medicine, because she also noticed he had a large kidney.

By this time I was in hysterics.  How could I have a baby with a cleft lip?  To me, I will love him all the same, but to everyone else he would be weird. So 2 weeks later on 14th December my appointment came.  I was anxious, but whatever they threw at me I was prepared to fight for my boy, after all who else would? So there I was again, anxious yet excited to see my boy. The consultant explained to me that given the swollen kidney and possibility of the cleft lip, he would like me to have an amniocentesis just to make sure we knew what precautions to take during the birth, such as having the neonatal team on hand if he needed it.

Without a second thought I was having the amniocentesis, obviously nervous with the slight chance of miscarriage, but I was quite far gone by then so my chances were lowered. Afterwards I went home and just waited for the dreaded call to tell me my results were in. I finally got the call on December 26th 2013, Boxing Day, to tell me the consultant wanted me up there right away, and within half hour I was there. It was 10am and I knew something wasn't right - if there was no news, he wouldn't want me in on the same day.  So there I was, sitting in the waiting room with my dad.  My mom was at home with my daughter.

I was terrified. My dad held my hand and told me it would all be OK and that they would stand by me. In came the consultant, his eyes were teary and I Knew it wasn't good news.  He sat down and was quiet for a minute, so I told him to just spit it out. That's when he told me... Your sons’ results came back trisomy 13. I had never heard of this. He told me people terminate because the outcome is not good. “Not a chance” I said - he deserved whatever chance he had. and I would be the one to give him that chance. I knew that if they weren’t prepared to support me I would find another hospital. He told me that of course he was going to support me, he was an amazing consultant!

During the time from then until the birth he got the neonatal team involved, who were in standby for the birth, and he arranged for me to have a detailed scan at the Queen Elizabeth hospital. Of course their advice was to terminate, and they also said they wouldn't resuscitate if I had him there. They said that because he had cleft eyes and would have a big hole in his face. All lies of course.  I was induced on March 20th in the morning - I was due a week later but I was in agony because he was hurting my back too much and I couldn't walk. I finally had him March the 21st at 6am, with my mom by my side. I had a natural birth thankfully.  I saw him for a second and gave him a quick kiss, then off he went to intensive care, and that's where we found out he had a VSD and double outlet right ventricle, cleft lip and palate, undescended testicles,  rocker bottom feet and no hearing.  I was mentally ready to fight for this boy! He required no help with breathing,  and within 2 weeks I got to take him home.

He's had 2 cardiac catheterisations,  surgery for his testicle,  a stomach peg fitted, which was the worst surgery as he went into respiratory arrest,  has had his stomach tied to stop vomiting and he's also had cleft lip and palette surgery. He can't sit up or hold his head; he's like a new-born baby.  He will be 3 this March and he's incredible! He never moans at anything, and although they said he wouldn't survive here he is.  Ivory O'Neale has mosaic trisomy 13, and he's living proof the doctors can get it wrong!