Sara Paige Grandy

 July 31,2007 - September 4, 2007

Garnish, Newfoundland Canada - Full Trisomy 13 with Translocation 13-14

Sara’s story

On July 30, 2007 I felt pains coming on real strong but they weren’t to bad yet, so I waiting another 2 hours until they got hard and really close together. At 12:30 am on July 31, I left for the hospital which is a 20 min drive. I got to the hospital at 1:00 am and registered at emergency. They sent me to the Ob ward. When I got there they put me in a gown and asked me to sit on the bed so they could hook up the monitor. They got the monitor on just as a big contraction hit, and they confirmed I was in labour. The nurse asked me to stand up get weighed and get my height taken. Knowing I was up, I went for a pee, knowing full well being through labor before, if you get the chance to pee you do it. I was checked before going to see my progress, she said 5 but I can stretch her to 6. Right on I thought, this isn’t going to be too bad. After peeing, I walked to the labour room, got up on the bed and was struck by huge pains back to back without any chance for comfort. The nurse checked me again she said 8 cm. Seconds after I got harder pains, I said I gotta push, and she said no you don’t and decided to check me again. By the time she got her glove on the baby's head was crowning, the other nurse with her had just enough time to drop the bed so the baby could be delivered, she said cleft lip and palate and ran to the warming bed with the baby as she came out blue. Me and my husband looked at each other scared to death, is she alright, she’s not dead please say she's not dead. During all this doctors from the ER were called in as the OB hadn't gotten in fast enough, and they needed someone to get the baby revived. A few minutes later they said she’s fine, she’s breathing, and they placed her in my arms. She was beautiful, by now I had noticed she had extra fingers and toes. None of this mattered to me as I had family members with extra toes and others with cleft lip and palate. I didn’t get to hold her long until they took her away from me again, as the pediatrician wanted to check her out. About this time the doctor arrived and did his thing.

When I got back to my room the doctor came in and said she’s not breathing to well without a little bit of extra oxygen, so they had decided to call the Janeway Children’s hospital for a transport. I was terrified by now, we had a fear something else was wrong as Sara hadn’t opened her eyes yet and babies open their eyes after they are born.

After Sara left for the hospital by noon that day, I was alone my husband had to go home and get things in order as we knew when we got released we would be driving to the Janeway to be with our daughter. I had a hard night, I cried myself to sleep, woke the next morning scared and alone. I felt helpless to help her.

We got to the Janeway on the 1st day of August. That evening we held her and fed her. She seemed fine except for her lip, we thought things were okay. Until the next day when we met with the doctors and they started telling us the things she had wrong. A sacro dimple on her bum (didn’t have a clue what that was), her eyes didn’t look formed right, her brain wasn’t properly formed, she had low set ears, she had a heart defect, and then the geneticist tried saying something about trisomy or extra chromosomes. We were in such shock we just looked at her and said we don’t have a clue what you are talking about.

Then a nurse came who we really liked having around and helped us feel comfortable. The syndrome was actually told to us by doctors but you all know how medical terminology sounds, she sat down and had a computer print out of information and explained things in layman’s terms.. She explained it to us that evening about trisomy 13, and the only way they could know for sure was blood work and the results would take a week. So great, here were are felling completely alone and helpless for Sara, not knowing if she was going to be okay or not.

Sara was 3 days old when she had her first apnea spell and they decided to give her a breathing tube. I was with Sara when she stopped breathing and I almost freaked out I had to leave the room. The nurse came out after and said she's fine now, but they wanted to give her the tube just in case she had another one. That day I really realized my baby was sick, very sick. I called my mom and dad crying telling them everything and they came in that night. We decided that day to have her baptized just in case she didn’t pull through this, so that night she was given her name Sara Paige Grandy.

As days went by Sara wasn’t needing the tube for breathing it was on c-pap assisting her airway basically. She was breathing on her own, but they kept the tube there just to be sure. On August 8 her due date we got the news Sara had full trisomy 13, and she wasn’t going to get better she was going to die. I wanted to die, I cried and cried, I was heart broken my baby girl, my sweet baby girl, no please you gotta be wrong. Not only did she have trisomy 13 she also had a translocation on her 13-14. So now they wanted to test us to see if we carried it. The next day we met with doctors and they instructed us to remove her breathing tube as soon as possible, but we had reason to wait, our son birthday was on the 10th and we didn’t want his birthday to be overshadowed with his sisters passing. So we waited till the 11 and let nature take its course then. WE had family and friends come to visit, those who wanted and were able to come see her could. So on the day of the 11th me and Darren sat with her by ourselves and removed her breathing tube, I gave her a bath read her a story and just held her. I refused to put her down. I was like, no way I can’t, I have to hold her. The doctors expected her to pass that day but days went by even weeks and she was still here with us.

On August 30 she had her first bad apnea spell, the doctors were called in, even the nurses huddled around us for support. Then she started breathing again, but she stopped for almost 5 min. Is this possible I asked, how can she stop for that long and breath again. The doctors really couldn’t answer, they were as amazed as we were. Sara did this for 4 days. We wondered what she might be waiting for and the only thing we could think of was her brother, she hadn’t met him yet. We made the decision that night to have him brought in the next day, if she was waiting for him, we didn’t want her to fight that hard she was so sick looking. When her brother came he was jealous, he didn’t want to be anywhere near her, he just wanted his mom and dad. We had been gone for almost 5 weeks at this point and he was being shuffled from house to house, something he had never done before. After meeting her brother that night I could see a huge difference in her. She looked like she was resting, she was sweating, she never did this before. We were emotionally drained that night so we went back to the care parent room in the hospital. That night at 3 am we got the call, she’s not breathing and her heart rate had dropped very low. We got to Sara’s bedside just as she was dying. I held my daughter as she dies and my husband was by my side. It’s hard to say but we were relieved she was at peace and she wasn’t fighting anymore. I cried so hard but I knew she was in a better place she was with her great-grandmother, a person very special to me, and that kept me calm.

I helped bath her and dress her. I helped take her handprints and footprints. I got pieces of her beautiful hair. I did as much as I could, I was taking care of my baby girl no matter what. I dressed her in her bright pink pooh suit that her dad and I picked out for her, along with the bonnet her nan knit, she was all dressed to go. I knew at some point I would have to leave but it was so hard. I had to leave her there, in her bassinette, cuddled up in a beautiful pink blanket. I left with a heavy heart, and I wanted to crawl in with her but I knew I couldn’t.

We left and came home that morning, and waited for the funeral home to call. We wanted them to let us know when they were out with her, so we could put her to rest right away. We had a service for her the same day, we didn’t want her put on display for people who weren’t sincere to come and visit. We decided this was for us no one else, we wanted her buried right away. That evening at 4:30 we gave her body to the ground, and gave her, her final resting place. It was a beautiful graveside service and her casket was beautiful, all white with butterflies all over it.

Melissa Grandy
melissagrandy@msn.com
709-826-2182