Bennett update....

Friday, December 08, 2006

Current mood: aggravated Category: Life I cheated and copy and pasted this from something i just posted on the support group site that i joined a few weeks ago......after writing this a couple of times today i just couldn't find the energy to do it again..... hello all....it has been a very interesting week. I attended some appointments in Toronto a couple of days ago.....for a fetal echo and a phase II ultrasound. The initial u/s results showed: ~a solitary enlarged heart chamber....which was explained to me by the geneticist to be indicative of HYPOPLASTIC LEFT HEART SYNDROME....told me this is inoperable....and a fatal condition...well.... THE FETAL ECHO SHOWED A 4 CHAMBER HEART!.....not HLHS.....the cardiologist was not able to get a good view of the aorta though...although the test involved being moved throughout 2 rooms....and they spent nearly 2 hrs looking at his heart function etc...so i feel they were very thorough...the cardiologist himself spent a bit of time looking at the end of the test.....and wants to have it repeated in 7 weeks time....at 31 weeks...Bennett was just laying in a poor position....the cardiologist said that he feels this is just technical difficulties....but a closer look will be given. so great! Then we were off to the next ultrasound. We had 3 different women looking at the testing as it occurred. One was a nurse...who performed the scan....one was a resident who was learning....and the other woman was a doctor...thank god she was there.....for she was wanting to take closer looks at things at this test went along....when the nurse was just wanting to skip from one thing to another....making assumptions that the dr had her go back and take a second look at.....and ruled out some things. The first u/s showed MILD HYDROPS....fluid buildup in the abdomen....thought to be caused by heart failure due to the seriously malformed heart..... THAT HE DOES NOT HAVE! They were unable to see any trace of hydrops....which is excellent. The prognosis for any baby with this condition...especially caused by a chromosomal abnormality is very lethal. They often do not make it full term...and are stillborn. The first scan also showed that he had closely spaced "orbits"..(eyes).....wrong again..... they assumed that this indicated that he had HOLOPROSENCEPHALY....which means that he would not be able to regulate his breathing at birth...and would also pass away from this. WRONG AGAIN!...they did not see it....they said his brain had divided as it should... NOW.....what did they see.....or think they may have seen....although admittedly they are not certain....so the other male DR. that i saw wants to have the test repeated again at the same date as the fetal echo will be repeated. They think they saw a smaller head....which they believe to be indicative of a Dandy Walker Malformation....not a fatal condition though...they did not see the back of his brain well....let's hope that they get a better look later and can rule this out also. The major thing they reported was that they were unable to see his left diaphragm....so they assume that it does not exist. This leads them to believe that he MAY have a LEFT DIAPHRAGMATIC HERNIA....which needs to be operated on immediately following birth. This hernia causes the stomach to be pushed up into the area designated for the heart and lungs....again though....Bennett was laying on his side...they had me rolling around trying to get good shots....but could not get them....so this is loosely based on what they were not able to see.....NOT WHAT THEY ACTUALLY SAW! The clincher here being this.... The male specialist i saw told us that this condition is operable....but because my son has been confirmed to be trisomy 13 through amnio....it will likely be impossible to find a surgeon that will perform the surgery he requires to keep him alive. We asked about the prognosis of the surgery in babies that have it performed...apparently they come out of it fairly well....this all depends on the condition of the baby's lungs at birth though...if they failed to develop much due to lack of space in the chest cavity then that can affect the surgery being sucessfully attempted...but he did say again that trisomy 13 babies will likely be refused this surgery. The other question i wondered about later was this....if the cardiologist spent nearly 2 hrs looking at my son's heart and lungs...why did he not see that his stomach was laying up in there? SO WHERE DOES THIS LEAVE ME?..of course i wanted to know.... They can arrange for me to give birth somewhere that he can receive palliative care until he passes away...but they have meds they can provide...and he won't suffer...... i asked him if i should cancel the future fetal echo appointment....he said no....he will see me again the same day to repeat the scan....hoping to get better shots this time....and he will book an appointment with a pediatrician to see me...or talk over the phone if i can't see him in person....hopefully i can persuade someone to treat this little guy's symptoms....not his syndrome. not worthy of treatment....even though everything else looks well....he will not suffer though.....well...i am not comfortable with that idea.....i did break down and shed some tears...no one even bothered to show an ounce of compassion...the male dr had left by that time....the women were just there to hand me a tissue box....and go about their business... The really great thing about it all was this... I WAS NOT ALONE....I was joined by another trisomy 13 mom from our group...Barb...mom to angel Annie...she was such a source of comfort and support....and we had a great day together despite meeting under dim circumstances. We are going to work together to see if we can get some answers concerning the lack of care for "our trisomy boy". I am not giving up like this....look how wrong they were the first time around. Big hugs all around...from Melissa & Bennett...xoxo