Algonquin, Illinois, (IL) -  Trisomy 13

Update: August 16, 2007

We just wanted to update everyone on baby Maliha's birth and death. I went in for my regular check-up on August 14th. My doctor said she could not find her heartbeat so she sent me to the hospital to have labor induced. I couldn't believe that after all this time, I would not be able to meet her alive. I would still have to go through the pain of labor though. The meds they gave me were supposed to take about 6-12 hrs to start working. Maybe it was a blessing in disguise that everything happened so quickly. Contractions started almost immediately and I had my baby in about 3 hrs. I didn't have any time for an epidural as she just wanted to come out.

She was born at 5:50 p.m. weighing only 4 lbs, 4 oz. Besides her cleft lip/palate, she was perfect. We didn't see any other abnormalities. I was sad that I did not get to see her open her beautiful eyes. We did have a photographer, Heather, from "Now I Lay Me Down To Sleep" there to take some pictures. We thought we would be able to spend some time with her while she was alive when we asked her to be there to take pictures. I think God had his reasons for taking Maliha when he did. We did not have to make the big decision of offering only comfort care, or keeping her alive with the help of machines that could cause her pain and suffering.

This is such a hard time for us. I thought I would be prepared to handle everything since we have known about the trisomy 13 diagnosis for about 4 months now. It is still very hard to cope with everything. That day went by so quickly that I keep trying to relive every moment in my mind. I will miss her so much and am sad that she did not get to meet her big brother. If she was born alive, we were thinking of letting him hold her. It would have been too hard to let him hold her and then have to explain everything to him since he didn't know mommy was having a baby and we didn't know she would be stillborn.

Her daddy and uncles went to the graveyard and buried her the next morning. I think it was hard for Saad, but it helped him be involved and get some closure. I know it will be very hard for us to deal with our grief and appreciate everyone's' prayers and support. I plan on helping fund a charity hospital in India that will be named after her and the other women in my family. Fatima Maternity Home will be opening in a small village in India and it will provide free services for the very poor and needy. It will be run on generous donations from family, friends, and anyone else who would like to help those in need.

Thanks,

Haajira and Saad

6-19-07
My name is Haajira Khan and I am a 24 year old mom of a 27 month old boy named Rayyan. Currently, I am 31 weeks pregnant with my second baby, a baby girl who has been prenatally diagnosed with Robertsonian Translocation Trisomy 13.

We're waiting for our baby girl to come into this world. My due date is Aug. 17. We picked the name Maliha because it means praiseworthy, beautiful, and strong. This describes her perfectly as she is fighting to come into this world alive. She has been prenatally diagnosed with Trisomy 13 which doctors say is 'incompatible with life.' Please pray for us.

Like my pregnancy with my first child two years ago, I experienced a lot of nausea and morning sickness. I was in India on vacation where I got the stomach flu so I was throwing up more than usual. At that time, I was 3 months pregnant and the initial ultrasound looked fine. I came back from India weighing less than before I was pregnant. Still, all my tests came out fine. However, during my 5 month ultrasound, the doctor noticed something that appeared to be a cleft lip/palate. I was devastated. We had no history of it in our family and I barely even knew what that was.

The doctor was pretty sure and urged me to get the amniocentesis done. I didn't understand because everything else had seemed ok and I knew there was a risk of miscarriage during the amnio. Still, I felt it was better that I know for sure if there are any other abnormalities.

I got the amnio done but had to fly out to DC to see my dying grandmother. As soon as I landed in DC, only 24 hrs after my amnio, I got a call about the initial results. The doctor said my baby girl has Trisomy 13 (Patau syndrome) which he said is not compatible with life. I was told I had the option to terminate the pregnancy.

Both Saad and I decided that it was not in our hands to take our baby's life. If God so wills, he can take her when he thinks the time is right.

Haajira Khan bholi_se@yahoo.com  


Submitted 6-19-07