My husband, David, and I decided after two years of marriage that we were ready to give parenthood a try. I was 25 and David was 28. We were both healthy, and active, and had just bought a house in Temecula, CA. The neighborhood was streaming with little ones and we caught the bug quickly.
After only about three days of trying, I got pregnant. The rest of my pregnancy went as smoothly. No morning sickness, no backaches, none of the horror stories you hear. I went two weeks past my due date and my doctor decided to induce labor.
Fifteen hours later, still no baby, in fact I had only dilated to one centimeter. The doctor announced I would have a caesarian. Ivy arrived at 4:46 PM on October 25, 1996, tipping the scales at 4 pounds and 3 ounces and 16 inches in length. When Ivy was born she was very small, and a strange silence fell on the delivery room. My husband and I were completely oblivious to this at the time, and were so happy to finally see her. The nurse took Ivy down to their NICU right away, to be cleaned up and monitored, until they could bring her back to my room where I lay recovering. David was running back and forth between the nursery and my room, as to not miss any of the action. He was the proudest new daddy I had ever seen.
Then David came into my room one last time, his face was bright red, and he was crying. He told me, in these exact words, "we have big problems." He had overheard a doctor on the phone downstairs in the NICU calling Children's Hospital in San Diego for a transport team. It was for Ivy. The nurse in my room called the doctor and told him he needed to come to our room immediately and explain what was happening, that David had overheard his telephone conversation.
The doctor explained to us that Ivy had a genetic disorder called Trisomy 13 and she would most likely not live through the night. They would transport her to Children's Hospital immediately were they were better equipped to handle these situations. You can't begin to imagine the devastation we felt. As I lay there recovering from surgery my husband went with her to Children's, where he spent the night with her. He took total control of the situation, and hasn't stopped amazing me since. He insured she was christened, and he stayed by her bedside until he was exhausted. The next morning he came back to Pomerado where I spent a sleepless night and told me how beautiful she is, how he sung to her all night, how they let him change her diapers, and rub her head and how much she looks like her daddy. He was the one who met with the geneticist that day and heard all the harsh details of Ivy's suspected disorder. He was the one who had to come back and explain to me how our daughter would die, just stop breathing, or her heart would just stop beating, that there was nothing we could do but love her. Ivy came back to the NICU at Pomerado after only 24 hours at Childrenıs. They explained there was really nothing we could do, and we had to make decisions such as, how heroic we wanted to be in extending her life, and burial proceedings, and things you just don't prepare to be dealing with. David showed me, the mommy, how to change her diaper, how you had to be so careful, how to clean her umbilical cord, how to rub her head just the way she liked it, how his voice calmed her when nothing else could. He is such a wonderful man. He pushed the doctors to let us take her home after ten days in the hospital. I was so nervous, I didn't want to find my baby dead in her crib after a nap, or something like that. He said over and over how we just had to love her now, and if that's all we could give her then we did the best we could do.
About a week later the good news came. Ivy actually had a very rare genetic disorder called Partial Trisomy 10Q. There was little information available on this disorder; therefore, the doctor could not give us a prognosis. However, with the diagnosis came the list of "anomalies" she also had. The initial characteristics listed were: atrial septal defect, a PDA (both closed on their own by 18 months) a soft palate cleft (repaired at age 1), fused eyelid on her left eye (now opened and suspended do to ptosis about 3 times) low set, laterally rotated ears (now on her second set of tubes) growth retardation, developmental delay and "bow shaped" feet. Ivy was admitted to Children's late in December 1996 with RSV and other complications. She and I stayed there for 30 days. She had pneumonia several times while we were there as well. The damage done to her lungs still haunts us. At that time she required oxygen 24 hours a day for about 3 months. We still use the nebulizer and suction machine at home when she flares up. They have diagnosed her with reactive airway disease (a fancy term for asthma.) Since we were already there, they began to run more tests. An MRI revealed she has agenesis of the corpus colossum. The doctor who reported the news to me lacked any sort of bedside manner and coarsely announced well, you know she's retarded!" Ouch! He was the second doctor to be added to the list of names I will never forget! An upper GI revealed she had gastroesophageal reflux. She still takes medicine to this day to help her with that. But it also revealed a surprise! She had malrotation of the large bowel. A condition that was life threatening if not repaired. Her respiratory situation was so compromised. It would be three more months until she underwent the 5-hour procedure to have it repaired. We also had a voiding cystourethragram done on her kidneys because I had read about children with this disorder commonly having renal problems. Fortunately Ivy does not. (It's nice to be able to say that about something!)
Ivy has always been a terrible eater. At age 4 she still only drinks formula and I feed it to her with a syringe in her mouth. She sits in a Sammons Preston feeder seat and watches videos while I basically dump it in her mouth. She is up to 32 oz. a day of Pediasure. Of course every doctor who has ever caught wind of this ritual suggests a G-tube. I have yet to cave in to their suggestions. She now weighs 23 pounds and is about 34 inches long (almost 3 feet). She is very petite and has very white delicate skin. She is the perfect little lady, so dainty and feminine.
We get PT and OT twice a week from California Children Services. They have seen her since age two. While her progress is admirable, it has been very slow. She can sit up with assistance, sit to stand with assistance and scoots around on her back like a pro. She loves to arch her back in protest, about everything that isn't her own idea, and it is impeding her progress. She has school at home 3 times a week and goes to a center-based program 2 times a week. Her skills are scattered all over the map in every area, with gross motor being the most challenging. She is very sociable, and very tenacious. She makes tons of noise, but no formed words. She does say "hi" but it is only recognizable to those in her close circle. She loves to watch videos from the Baby Einstein Company and The Simpson's. She has a crush on our local weatherman and stops whatever she's doing when she hears his voice.
Eight weeks ago I gave birth to our son Kadin. We knew from the initial genetic testing that we were not carriers of 10q, so we just had to overcome the shell shock of the first time. I had a CVS done at 10 weeks gestation and found his chromosomes to be normal. He is healthy, and delightful, and entered the world at 9 pounds 13 ounces. Close to three times his sister's size! We hope he will provide a positive role model for her, and look forward to them starting to interact with each other. We are so excited about this website. I don't know how we missed it for so long. Please feel free to contact us about anything you have read here, or any questions you might have. As all of the families here would agree, we love to talk about our amazing miracles with partial trisomy 10q!
For the most part, everything is well with Ivy. She continues to go to school
everyday, with her home health nurse, and a one on one aid from school. She
seems to love the other kids. She always takes her walker or bike right into the
middle of the crowd as they change classes. She still doesn't talk, but is very
engaging and very willful. Her biggest health challenge is her respiratory
system and her biggest health concern continues to be her heart. Her hypotrophic
cardiomyopathy is now in her left ventricle as well as her right, where it was
originally diagnosed three years ago. It still is very mild, and not being
treated, just monitored.
--- Shannon Poole
|Birth Date||Oct 1996|
|Parents||David and Shannon Poole|
|City||Temecula, California, USA|
|shanshark[at]mac[dot]com (change [at] to "@")|
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