Delainey Disna

 

  Delainey Disna ~ Full Trisomy 13 ~ Born:  April 27, 2012

 

Delainey was diagnosed via ultrasound at 26 weeks with abnormally large kidneys and we had to follow with fetal assessments every 2 weeks to see if there were any changes, they also noticed she had a one artery umbilical cord. The dr.s prepared us that she may need to be put on dialysis and possibly need a transplant as she got older. I was devastated. I thought to myself "this is awful, the worst possible news ever" Only to find out at birth that she would be diagnosed with a terminal disorder.

Delainey was born almost 7 weeks early and was 4lbs 5oz and 18 inches long. She was born with a cleft lip and pallet, a hole is her heart, one of her aortas tapered off and was severely deformed, she had enlarged severely damaged kidneys with large cysts on them, her left eye was fully developed but much smaller and blind compared to her right eye and was fused shut.

On the outside, aside form her eye and mouth her body is perfect, 10 fingers and 10 toes, adorable legs, feet and hands. In the weeks to come she went through extensive testing and it was such a stressful time in our lives. All I could think of was "What am I going to tell my friends and family? What are they going to say about her? What if they think we did this to her?"

We decided early on to be honest about Delainey's condition, mostly because if I wanted support during this difficult time we would have to inform everyone about what it is we need support for. The reaction from our friends and family was so positive and encouraging. We have full support from so many people, friends, family and even strangers that have heard about Delainey's story and have been praying for our family.

At 3 weeks old we had asked the chaplain at the hospital to come and bless Delainey and lay hands of

healing over her kidneys and her eye (at that time those are the only 2 things we knew about) It was at week 4 that she would be diagnosed with full Trisomy 13

When Delainey was discharged at 6 weeks old the hospital ran a few more tests just to update their records and when they brought her in for her scan of the back of her eye they noticed she had opened it, also the ultrasound of her eye showed she was no longer blind, earlier testing showed a dark haze over the eye.

They also did blood work and her kidneys although were still damaged were operating at a steady rate and she would no longer be of concern. Her potassium, hemoglobin and all other levels tested all came back NORMAL. Also, all of her cysts were GONE

At the beginning of September 2012 we had her heart tested via ultrasound to see how it was functioning because she is going for her cleft lip and nose repair and the anesthesiologist wanted to know if her heart could handle it. After waiting in the office for about an hour the Dr. came in and asked us if we had seen photos of her heart at birth, we did not, so she showed us, you could visibly see s severely deformed aorta and large hole. She then proceeded to show me the current heart.......I was confused and the Dr said "Your reaction was the same as mine" We were looking at a completely different heart, with NO ABNORMALITIES, her heart was diagnosed as 100% normal, and we were told there was no need to have to ever come back and that we were parents to a true miracle (of course any parent to a Trisomy baby already knows this as well)

Currently Delainey has been healed of all her problems minus the actual Trisomy diagnosis itself and although

we have accepted it I still have great faith in our Lord and have seen his work in our daughter and in other peoples children as well and I will continue to pray for healing.

Delainey is only 9lbs at 5 months old and still behaves like a newborn but she is so bright and she has brought so much love and life into our home. She's always smiling and playing with her hands. She loves to sit in her jumperoo and push her feet off, she's also doing really well attempting to control her head and hold it up.

I told myself at the beginning of this all asking myself "How will I ever live with a child like this?" (out of anger of course) and now I couldn't imagine my life without her. She is my light, my saving grace, my everything.

 

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa  

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