ANNA DEKOWSKI
DUE: NOVEMBER 13, 2002
Place: CANTON, OHIO, USA
MY NAME IS CHRISTINE DEKOWSKI.
I AM FROM CANTON, OHIO WHERE I LIVE WITH MY HUSBAND AND 2 YEAR OLD DAUGHTER EMMA.
CURRENTLY I AM 30 WEEKS PREGNANT, DUE NOVEMBER 13, 2002, AND MY UNBORN DAUGHTER HAS BEEN DIAGNOSED WITH PALLISTER KILLIAN SYNDROME.
I HAD AN AMNIOCENTESIS AT ABOUT 18-20 GESTATION THAT DETERMINED THE ABNORMALITY. IT WAS SUSPECTED BECAUSE ONE OF MY LAB TESTS CAME BACK WITH AN INCREASED RISK OF DOWN SYNDROME AND WHEN I WAS SENT FOR FOLLOW UP OF THAT THE DR. SAW OTHER "MARKERS" THAT LED HIM TO BELIEVE THAT SHE WOULD BE AT A HIGHER RISK OF DOWNS SYNDROME.MY HUSBAND AND I DECIDED NOT TO HAVE THE AMNIO AT FIRST BECAUSE OF MY RELIGIOUS BELIEFS AND BECAUSE I WASN'T GOING TO TERMINATE FOR ANY REASON. BUT AFTER LEAVING THE DR'S OFFICE AND CRYING FOR WHAT SEEMED FOREVER I DETERMINED THAT I COULD PROBABLY JUST PUT ALL THIS BEHIND ME BY HAVING THE AMNIO AND KNOWING NOTHING WAS WRONG. SO I WENT THE VERY NEXT DAY AND HAD THE PROCEDURE DONE, WHICH WAS REALLY NOT ALL THAT BAD AND THEN CAME THE WAIT.
WELL, SEVERAL DAYS LATER ONE OF THE DR'S CALLED AND SAID THAT THEY DID A "FISH" TEST WHICH TESTS THE 5 MAJOR CHROMOSOMES AND THAT THEY WERE ALL CLEAR OF ABNORMALITIES AND THERE WAS NO DOWNS SYNDROME. SO WE REJOICED AND WERE SO HAPPY BUT IT WAS SHORT LIVED.
JUST ABOUT A WEEK AND A HALF LATER THE NURSE CALLED ME AND SAID THE FINAL RESULTS OF THE AMNIO WERE IN AND THERE WAS AN ABNORMALITY AND WE NEEDED TO COME IN AND TALK TO THE DR.THAT IS WHEN IT WAS REVEALED THAT SHE HAS THE EXTRA PIECE OF THE 12TH CHROMOSOME. THE DR., TO MY HUSBAND AND I, SEEMED VERY COLD AND UNFEELING AS HE GAVE US THIS LIFE SENTENCE OF DOOM AND GLOOM. (ALSO SHE HAS A HEART CONDITION, TETROLOGY OF FALLOT).
AFTER THIS I WAS READY TO FIND A NICE TALL BUILDING AND JUMP, BUT LUCKILY, AFTER MUCH PRAYER AND BETTER INFORMATION FROM OTHER DR'S AND WEBSITES AND FAMILIES SUCH AS THE ONES ON THIS SITE I HAVE BEEN BETTER ABLE TO EMBRACE WHATEVER MY FUTURE HOLDS FOR MY BABY AND MY FAMILY.
I HAVE ALWAYS BELIEVED THAT A CHILD IS A BLESSING NO MATTER WHAT PROBLEMS COME WITH THEM.
I HAVE ONE HEALTHY CHILD AND I HOPE TO HAVE ANOTHER ONE, BUT IF I DON'T, I KNOW THAT FOR SOME REASON GOD HAS ENTRUSTED US WITH THIS CHILD AND WE HAVE TO DO OUR BEST TO LOVE HER, NURTURE HER AND TEACH HER FOR AS LONG AS WE HAVE HER.SOME ONE SAID TO ME THROUGH THIS THAT THOSE OF US WITH "SPECIAL" CHILDREN ARE THE LUCKY ONES BECAUSE NOT JUST EVERYONE CAN HAVE A "SPECIAL" CHILD.
First update: 7 Nov 2002
Anna Joy Dekowski was born on October 11, 2002 by emergency C-Section, five weeks Premature. I was hospitalized the weeks she was born because she was having low heart rates on the non-stress tests and was nonreactive at times also. The High risk doctors that I was seeing didn't want Anna to be born yet so they were just watching me/her in the hospital. Doing ultrasounds and keeping me on the fetal monitors. Finally on Friday (October 11) my regular OB/Gyn came in after watching everything on the monitors and said he was very concerned that the baby needed to be born NOW! This was a moment of panic and relief. He was concerned that she was not getting enough oxygen. So he went out into the hall to have a discussion with the high risk doctor and came back in and said to get me ready! With in one hour Anna emerged with a small cry. She was originally intubated but she coughed up the tube and began breathing on her own with in minutes of her birth. She was extremely purple when she came out, so I assume that my regular OB/Gyn was right about getting her out. I must add that he is a wonderful doctor with much compassion!
Anna was stable soon after birth and I was able to hold her for a couple of minutes, she was put on a little extra O2 and had some IV's but that's all. The next day she was transferred to a local children's hospital and that is where the fun began. When she was four days old I met with one of the neotalogists and his "team" of residents and nurses. He advised us that Anna would be profoundly mentally retarded because that's what the books say the majority of PKS patient's are. He said we should just keep her comfortable and "let nature take it's course". Well if we left everything up to nature we would not need doctors because we would all be dead! We let him know that we want to do everything possible for Anna until she let's us know we should stop. Well, he's thinks that we are not facing reality but we are the ones that have to live with our decisions and our daughter.
Anna is four weeks old now and has just had a feeding tube placed in her stomach. She also had her appendix removed at the same time because it was in the wrong place. She has had some set backs recently. She has trouble keeping her blood oxygen level at good rate and needs extra oxygen now, but she does well with just a little extra. She has stopped breathing twice when I have been holding her and has turned purple several times because of the lack of oxygen. But she is on some medications now to help with that.
Some of Anna's problems are: Cleft palate, tetrology of Fallot (hole in her heart), enlarges kidneys, her anus in too close to her vagina, foot drop on the left foot, does not open her hands on her own, sacral appendage, small gallbladder, etc.
Some days it's hard to get out of bed, but I know this is only the beginning and I have to be strong for both of my children and fight for everything they need even if they can't ask for it themselves, as in Anna's case!
Anna came home from the NICU after a 46 day stay. She came home on November 26, 2002. She needed to be on continuous oxygen and was also on an Apnea and heart monitor. She was quite easy to care for as she slept most of the times, as most newborns do. Things were going along rather smoothly until December 8, 2002 when she turned completely blue and her heart monitor was alarming due to a low heart rate. We called the paramedics and she then ended up being re-admitted to Children's Hospital. They had come to the conclusion that she most likely had severe reflux and that when she refluxed this time it irritated her heart and caused the blue face and low heart rate. Well while she was in they wanted to make sure she did not have pneumonia so they ordered some X-rays. During the 2nd set of x-rays she got very mad and blocked off her airway, went limp and was completely white. She was resuscitated and taken to the Pediatric ICU. They thought she was going to need to be but on a ventilator at that point because she was breathing so hard and has a floppy airway and a big tongue. The doctor said that before they did that he wanted me to hold her to see if that would calm her down. With in minutes of me holding her she calmed and her airway opened up and she was fine.
She knows her MOM!!! She was then sent home on December 12, 2002.Again she did very good at home, except that she liked to be up from midnight to 3am every night. So I wasn't getting much sleep. While Anna was home we found that she liked taking a bath and having her head rubbed. Then just as we were getting comfortable again she appeared as though she was getting sick again. She was coughing a lot and her Blood/Oxygen level was not staying at a healthy level. We tried Turning her O2 up but that didn't help. I called the doctor and she said to bring her in (December 26, 2002). So we drove her up to hospital. About 15 minutes into the ER she just couldn't breathe on her own. They worked and worked on her to get her to breathe and she just could not do it. Her heart rate was dropping and she was near death, again. She had to be put on a ventilator. Once again she was taken to the PICU. We sat down with her doctor and discussed her course of treatment. They thought she had RSV or Pneumonia but all her tests came back okay. This left us wondering. the gathered that she must just have a cold. At this point, a tearful mother and father, talked things over with the doctors and told them that when she came off the ventilator in couple of days we did not want her to be put back on the ventilator if she could no longer breathe on her own. We have never wanted to make the decisions of whether or not Anna would live or die. This was reason we did not want her on any type of machine... because we did not want to ever have to say to turn it off.
On December 28, 2002 Anna was doing rather well and was able to begin weaning off the vent. From the moment they told me that I had a knot in my stomach. I didn't sleep much that night. I called my husband first thing in the morning and told him that I wanted him to be there for when they took her off the vent. At sometime after 2pm or 2:30 they took her off and began trying to clear her airway to see if she would breathe on her own. They tried everything...c-pap, oxygen tents, bagging, positioning. About a 1/2 hour later it was obvious that she would need to either be put back on the vent or go to be with Jesus. She chose Jesus. She laid in my arms 45 minutes until her heart stopped. This was the most difficult thing I have ever done in my life. But I could not watch my baby lay in a bed drugged up just so that she could have a tubed stuck down her throat. She would gag and gag and need suctioned every 2-3 hours. Each time they suctioned her they would give her more drugs to keep her calm. I couldn't see any quality life in that. She would needed to have a tracheotomy to live and may have been vent dependent for the rest of her life.
I know that we have made the right decisions with our Anna and can live with ourselves. I pray that as time goes on more research is done on PKS to help people like my Anna have better lives.
PLEASE FEEL FREE TO EMAIL ME IF YOU HAVE SUGGESTIONS OR JUST WANT TO CHAT, mailto: ejd5191@juno.com.