Another Bennett update

Sunday, January 21, 2007

Current mood: discontent Category: Goals, Plans, Hopes Another week passed.....I cannot believe it. If there ever was a time I wanted to stop time....it is now. On January 12 I was in Toronto for a fetal MRI. The results confirmed that my tiny Bennett does indeed have a 'LEFT' CONGENITAL DIAPHRAGMATIC HERNIA.....CDH for short. These particular hernias are most common on the left side...but can occur on the right as well. This birth defect always requires a surgical repair as soon after birth as possible. Stabilization is a huge issue here. In most cases these hernias are so severe that it prevents the lungs from developing properly preventing adequate breathing at birth. These severe hernias can often involve herniation of the entire stomach, liver, and intestines. Bennett is so lucky! His CDH is not severe at all. His lung development is very good. His left diaphragm is there....but there is a hole in it that is allowing only the top of his stomach and spleen to push against it.....therefore his lungs are not compromised at this point. He should be able to breath at birth on his own. He may need to be put on a ventilator though....to prevent air from getting into his stomach and intestines which can then expand these organs and cause further pressure on the lungs. He will receive nourishment through an intravenous, either through the umbilical cord or through one of his tiny arms as he will be unable to eat until the surgery is performed. Immediately following birth he will be whisked away to the neonatal intensive care unit....aka NICU.....at the delivery hospital. He will then be taken across the street through underground tunnel to the children's hospital for the rest of his surgical care. This could involve a stay of several weeks, depending on how he does with all of this. I returned to Toronto again last week for appointments all day on the 17th. The fetal echo was repeated by a cardiologist at the children's hospital. He is a very nice young man. He was very thorough in his investigation...and explanation of what he saw....and what he didn't see. What he saw......a normal 4 chamber heart...YAY!....far cry from the solitary, enlarged chamber I was told he had earlier on. What he didn't see.....a clear viewing of the aortic arch. Bennett was still lying a difficult position for proper viewing....so he is unable to report that he didn't see any problems....but that also means he cannot report that everything is fine either. He told me that most of these complications....IF HE HAS ONE......do not require surgical repair. Apparently there are medications that can help. If he does need surgery....he assures me that this condition is seen so often....it is not a major surgery to fix this and he would not hesitate at all in ordering that it be performed on my trisomy 13 baby. He also shocked us by telling us how he understands that there can be such a broad range of how mildly or severely affected that these babies can be.....which was great to hear. Many doctors will only admit to knowing how very, very severe it can be.....and will not admit that there are survivors that thrive at all. It seems that this young cardiologist has been doing his homework!.....Kudos to him I also spoke with a social worker that will help me when Bennett becomes a patient there. She is a very nice woman that obviously loves her job. I also spoke with a woman who is the Director of Patient Rep. Services at the children's hospital. I explained to her my fears....and also what I want regarding my treatment of my little fellow. She has already followed up by sending a memo to the Vice President of Patient Care....as well as to the social worker and another woman in some other department that I am unfamiliar with at this point. Apparently they will be assisting me in getting the care I want for Bennett regardless of the fact he is a trisomy 13 baby. He should not be denied treatment of any kind.....it is not his fault he requires this surgery.....and no one has to raise him afterwards....just me. I have already accepted that he will have "DIFFABILITIES".....meaning....different abilities than you or I do.....he is not disabled in my eyes. He is perfect to me. The perinatologist....who is a doctor that specializes in deliveries of high risk pregnancies.....is setting me up to see a surgeon on my next visit....in about 3 weeks time. He wants me to see the Chief of Surgery....but cannot tell me that this man will agree to the surgery that he so desperately needs in order to survive. This frightens me......which is why I have already spoken with the patient care people. I had another ultrasound done....this time in a room that was equipped with a monitor mounted infront of me for viewing exactly what the nurse was seeing as she performed the examination. This time around she was very patient with me as i asked to see various parts of him....including his face.....and she printed me off a couple of pics to bring home....free of charge....as they are supposed to charge $5.00 a piece for them. His face looks perfect. It is not the best pic....since he was turned enough away that there was a shadow cast on his left eye...but he does not have a cleft lip as most of these trisomy babies do. He was also head down.....I just hope he stays that way. He had obviously shifted that way following the earlier fetal echo.....the little monkey! The MRI also confirmed that he does indeed have the Dandy Walker malformation that they suspected from the earlier u/s. What this means in terms of prognosis is unknown at this time. His is appearing as not severe....which I guess is a good thing. Some babies with this also have hydrocephalus....fluid on the brain....that requires drainage.....HE DOES NOT HAVE THIS....... From what I have researched about this condition some people with mild affliction can live their entire lives without this affecting them negatively at all. They can have normal intelligence. I already know that because of his trisomy 13 he is expected to have developmental delays anyway....so if this means anything for him at this point is unknown.....as in every case. So now...I know I am to deliver in Toronto. Date unknown. It will be a scheduled induction. The other boys were not early...infact they were quite comfortable in there and did not hurry to get out at all.....so the likelihood of my going into early labor is not a grave concern at this point.... Normally in these situations women will be induced at about 38 weeks.....2 weeks early.....40 weeks is considered full term....but anywhere between 38 weeks and 42 weeks is ok. Prior to 38 weeks is considered pre-mature....and post 42 weeks in not allowed in a majority of births. Two of my guys were born on the 14th day overdue...the last one was that late and had to be induced to come out on that day. The doc hopes to get me to 39 weeks for optimal lung development....I am due March 28th.....so he may be born the week before. The rest is in God's hands.