Had to go to the RVI MAU today as bumpzilla refused to move. I was on the full hour and criteria still wasn't achieved but there was a spell where I pushed the button and awful lot so they deemed us fine to go home. Then I went to an Ann Summers party tonight that got raucous....that certainly woke her up. Lee just bumped into me by accident and freaked out so I put the doppler on to calm him which she kicked off. Needless to say, I think she's fine, little git!
Our first renal letter came today which I will share. It's not too scary and sometimes reassuring actually!
Dear Naomi and Lee,
I met you in the fetal/renal clinic on the 17th Dec, 2010. It gave me an excellent oppurtunity to discuss with you the baby's ultrasound scan, possible diagnosis, post-natal treatment plan and long term prognosis.
Firstly, I informed you that the baby's kidneys look big and bright on ultrasound scan and there is no fluid around the baby. This ultrasound picture is very suggestive of autosomal recessive polycystic kidney disease. I explained to you that recessive means that both parents are fit and healthy but do carry a wrong gene. For one to get the disease, s/he had to inherit the two wrong genes (one from each parent). Poly means lots and cyst is a balloon like formation in the tissue. Usually after birth these children do have large kidneys, which can easily be seen or felt.
I understand from Dr Sturgiss (fetal med consultant) that your previous ultrasound scan did show the presence of fluid around the baby. Now at 28 weeks gestation one shouldn't expect the baby's lungs are affected. You might remember that for lung development the baby needs to breathe the fluid, which, in essence, is the baby's own urine. Immediately after birth, one might expect some respiratory problems but we do not envisage it to be severe enough to warrant a respiratory support (note from Naomi: I think she maybe will need some help but her lungs and chest do measure normal).
Regarding kidney function, I commented the baby may need kidney replacement treatments (dialysis). I explained peritoneal dialysis to you, how we do this, and mentioned that at this age and size, peritoneal dialysis is the best treatment option, but certainly associated with complications such as infection. I told you that feeding could be a problem in children with renal failure. I briefly mentioned kidney transplantation. You understand a child will need to reach a certain size (weight above 10kg) to be able to receive a transplant. I mentioned that both of you can be potential donors and explained that kidneys from live related donors do better than kidneys from a deceased donor.
you understand that polycystic kidneys are associated with hypertension (high blood pressure) and sometimes a child will need more than one blood pressure medication to have good controlled blood pressure. I also mentioned that sometimes we decide to take the kidneys out in order to control blood pressure. When we discussed genetics I explained that you are both carriers and you questioned what the chances would be for your next child to inherit the same condition. You might remember my drawings which explained that one in four children is healthy, one in four is affected and two are carriers. You also understand that the liver is affected in this condition.
Finally, I told you about the prognosis in patients with ARPKD and informed you that about 70% survive the first months in life. The biggest problem at this time is the undeveloped lungs, which we are not expecting in your child. All children who survive the first year of life, about half of them will be alive at 15. I offered you to meet a family of a child who is already on peritoneal dialysis, which you accepted. One of our renal nurses will contact you and arrange the details of this.
Yours sincerely
Dr M Ognjanovic
Consultant paediatric nephrologist
So, all in all, pretty confident about her lungs but I do think she will need help still. Made me feel better through the day though that doctors have some confidence in Ellie's respiratory ability!
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