My husband and I had to use fertility drugs for 5 years to get pregnant with my son. Our daughter Kelsey came along 2 years later. Eight years went by and all of a sudden at 39 years old I was pregnant again. We thought it must be our miracle child. Since I was advanced maternal age I had to do genetic counseling. The genetic counselor told us our chances of Down Syndrome and we were totally ok with having a Trisomy 21 child. She also mentioned Trisomy 18 (Edwards) and Trisomy 13 (Patau) but we were sure that would not happen to us.
When I was 20 weeks along I had a level 3 ultrasound. Three markers were observed; intra-utero growth retardation (IUGR), clinched fists and plexoid cysts on the brain. We decided to do the ABR screening as it is non-invasive. About 10 days later the results came back as a 1 in 24 chance of Trisomy 18. We started to study the syndrome to determine what we wanted to do. The perinatologist and genetic cousellor were telling us this was incompatible with life and the babies either died in utero, during the birth process or right after. The genetic cousellor did give us a very old copied way too many times brochure from SOFT.
This was 1997 and the internet was not there to help us. We looked in the library but mostly found dead baby pictures and no living statistics. We decided to have an amnio to help us know for sure. The genetic cousellor gave us some books on how to do an “early delivery”. This was ceremonies people had conducted for babies they had just killed by making them come too early. I knew it was not something I could do. We were getting some family pressure besides all the medical community to terminate. A lot of folks thought I was going to have a mental breakdown. I did kind of crawl in the study and not come out for 2 weeks. My husband had to do all the Christmas that year by himself.
The amnio came back as full Trisomy 18 and a girl. I met with our priest and just decided I needed to let whatever happen that was suppose to happen. I called SOFT and asked for some families to talk to. What I remember is that in all 3 cases the babies had died, there was no one to talk to that had a live baby.
My next priority was to plan for all circumstances. I had birth plans for four scenarios:
1-she would die in utero so I needed to cherish my pregnancy as much as I could.
2-she would be born but die in the birthing process. We visited the rooms set up in our hospital where you could spend time and bathe and take pictures of your baby.
3-she would be born and come home but live 2 weeks or less.
4-she would be born, come home and be with us for 6 months.
As you know already we got option 4! The hardest thing I did was making funeral arrangements for the baby I was about to have. I did not set up a nursery because I did not want to come home to one without a baby.
When Kammie was 3 days overdue I decided to be induced because I was stressing out as to what was going to happen. She was born vaginally and quickly at 4 lbs 5 oz. They did not measure her or give her the apgar test as they were checking her out and they thought she would pass quickly. In the picture at the beginning of this story you see her brother (who was 10) holding her about 30 minutes after she was born, he was the first to hold her.
She had no breathing problems only problems with temperature stabilization. They put her in the level 3 nursery with the preemies. She had a big DNR label on her bassinette as we decided to opt for comfort care (keeping her warm and fed and loved). They put in an OG tube and we tried a preemie bottle but it took so much energy for her to suck we wanted to tube feed her also. We ran out with the big kids and bought a car seat and a bassinette (my other kids were too big so I never had one) so we could bring her home on day 3 weighing 3 lbs 14 oz.
Hospice sent over a nurse every other day at the beginning to check on the OG tube placement. I had to feed her every 3 hours all day and night. We decided to go home with no monitors. I did not want alarms going off and making me too nervous to enjoy her as long as I had her with me. We took her everywhere (the big kids were at 10 and 8 very active at school and soccer and basketball.) The whole first year was about trying to get her to gain weight. She has RSV at 6 months old, lots of pneumonias and a GI bleed at 15 months. The medical problems calmed down at about 3 years old.
Kammie is now 8.5 years old. We have been blessed with many years with her and hope they continue. Her big brother and sister are much better people because of her.
Back to Trisomy 18 Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.