Daniel J. Summers » Charter Member of the VRWC

I’ve received another update from Charles and Judith about their baby (previous updates here).

The baby was 24 weeks old on July 18, 2007. It has been seven weeks since the water broke. Only one baby in approximately 128 with PPROM will live this far. Because it has reached this age Judith and the baby went into the hospital on July 18. She has received two steroid shots that they hope will help the baby’s lung tissue develop.

Today, July 19th we got another sonogram. The gestational age was 22 weeks and three days so as expected it is undersized. However there were some positive things. Since July 2nd the baby’s weight has increased from 300 grams to 516 grams (1 lb. 20 oz.). There was some confusion in the initial report of the birth defect as to whether it was an omphalocele or whether it was gastroschisis. Gastroschisis is a bigger problem but fortunately they think it is omphalocele and also they think that the liver in not involved and in its normal position. That is still serious and life threatening.

The main threat now is the possible lack of lung development due to no amniotic fluid. No matter what the weight or other factors this one is the key. Unfortunately the lung tissue cannot be seen on the sonogram. There is only one way to tell if the baby has enough lung tissue to survive and that will be to test them out in the real world when the baby is delivered. Each day that there is a delay in the delivery of the baby increases its chances. So there is increased hope, increased chance of survival but make no mistake, at this point the percentages are not great. The baby is on the cusp or edge of being or becoming viable. This is more than could have been reasonably expected at the beginning, so all praise to God for His love and mercy toward us and thanks to all of you for your prayers and support.

I received another update from Charles about their baby (original request here, first update here).

Sorry about all the medical jargon in this email, but I can only pass on what we have been told and what we have researched. It is hard to translate all this to regular English and if some of you want to do your own research the technical terms can aid in searching although at times they can also hinder getting understandable articles.

Prior to today the best web information I have found is at:

http://www.emedicine.com/med/topic3246.htm

From that we knew that “Midtrimester (13-26 wk) PPROM has a dismal prognosis”. (PPROM is an acronym for pre-term premature rupture of membranes.) Most women (93.75%) with this condition go into labor prior to four weeks, but a very few continue on for longer periods. In this case we are among the fortunate few who beat the odds. However as you we see below there are other even longer odds stacked up against us and our baby.

The sonogram result from today is that the baby is underdeveloped for its gestational age and there is very little amniotic fluid. No movement of the baby was observed although from time to time Judith has felt movement. The heartbeat is still normal.

Both our ob-gyn and the specialist we saw today have never seen a case like ours where the baby has survived. We did not talk much about the birth defect (omphaocele) or the operation for it except that she did mention that the chances of other birth defects such as downs syndrome etc. is high. We mostly talked about the fact that without the amniotic fluid the baby’s lungs will not develop properly. This would result in pulmonary hypoplasia which means the baby would not be able to breath and probably would not survive even if that was the only problem. If the baby survives another two weeks (until after July 15) we could transfer the prenatal care to this specialist. The only treatment would be bed rest and to administer steroids to hopefully aid or accelerate the development of the baby’s lungs. Judith would have to stay in the hospital all the time until the baby is delivered. Nobody knows when this might be. Potentially it could be up to 16 weeks or so. Even with all of that the chances of the baby surviving are “one percent or less”. This just the risk from the pulmonary hypoplasia alone without taking into consideration the operation required for the birth defect. That defect alone is also life threatening i.e. without the
operation the baby will not survive. That operation must be done under general anesthesia and so of course the baby must be able to breathe in order to survive that. There could possibly be some slight delay between the birth of the baby and the operation to allow for more lung development, but if that is possible it would have to be “very carefully managed”.

I am sorry the news is not more encouraging. Obviously most of our hopes have not yet come to pass. We are grateful to God for the extra time that he given us with out baby, time that others are not so lucky to have. (While PPROM happens in only 3% of pregnancies that is still 150,000 pregnancies a year. My heart goes out to all those people who have suffered as much or even more than we have.) We always hope and pray for the result that we desire but we end our prayers asking for God to help us in accepting His will for both us and our baby. In this life we usually do not see or understand why we must suffer, but I believe this life is just part of a deeper, more encompassing reality where somehow all of this has meaning and makes sense.

Than you again for all of your prayers and support.

The baby’s not out of the woods yet. The prognosis is dim, but it was dim when we first started praying. Keep Charles and Judith in your prayers.