Thursday, January 10, 2013

Birth Plans

The past few weeks have been overwhelmingly full of good news and lots of decisions.

A few days ago the maternal fetal doctors in Greenville met with the neonatology team regarding our sweet Auguste and preparation for his arrival. I wrote a letter to address some of my questions and I will basically post parts of my letter, including questions, as others may want the same answers. This letter was also sent to MFM docs at CHOP and got a wonderful response from Dr. Johnson with answers I would also like to post as well as some of his comments.

My letter also has a brief outline of our experience thus far with Auggie.

My letter:

Hi. I have a lot of questions as I move forward in these last few weeks before delivery of our son, Auguste Losinski. We truly want to set up a birth plan in these last few weeks and feel the input of all is needed to make these arrangements.
A quick recap for anyone unfamiliar with our case: at 19 weeks, our routine biophysical ultrasound (done at MFM due to advanced maternal age) showed non-immune hydrops, with bilateral pleural effusions and abdominal ascites and slight chest wall edema. Ultrasound done for gender only at 16 weeks did not show any fluid, so it did seem to happen acutely.
All testing, amnio, micro array have not showed any cause. Noonan’s test was sent but I am unclear on whether results have been obtained. ECHOs have also been normal. Second opinion obtained at CHOP in Philadelphia with doctors ultimately doing a thoracentesis at 22 weeks showing  approx. 6cc of clear fluid resulting in 85% lymphocytes.
Fluid remaining but always being quite stable and never great enough where CHOP felt comfortable doing shunt placement, and thus weekly monitoring since that time.
At 26 weeks met with Dr. Ruggeri, Greenville neonatology, to let him know the situation and be prepared in event of emergency.
At 28 weeks, pleural effusions began to resolve slowly. Seen at CHOP at 29 weeks and 30 weeks, where effusions continued to resolve, abdominal ascites stable (approx. 5 weeks ahead of babies gestational age each week.
At 33 w 3 d (1/3/2013) ultrasound with Dr. Dellinger showed near resolution of pleural effusions with only a small amount of fluid remaining in diaphragm area and abdomen measuring approximately 38w3d (although Dellinger did feel it looked a bit improved).
We are at 34 weeks now, and the past four weeks have showed so much improvement that I hope that the next four show as much improvement in the abdomen. Ultimate cause of chyle fluid remains unknown.
I feel grateful we have come so far and that our son seems to be thriving despite the illness that he seems to be and hopefully is clearing. We had initially planned to deliver at CHOP if this was planned and we are now trying to decide what is the best possible scenario regarding best possible outcome, but also sparing ourselves as much as possible due to financial and physical resources of having three children who live in Greenville and CHOP wanting me to relocate to Philly at 36 week point.
I feel that I have gotten mixed feelings regarding what he may need and how delivery needs to be set up, and I understand this as I know that his case is not the usual case regarding babies with non-immune hydrops. I hear lots of different perspectives both from physicians and also from other mother’s experiences with 
 hydropic babies.

1.       C-section or Vaginal? 
2.       Will this be determined based on size of abdomen at delivery time?
3.       Is there risk of trauma from vaginal birth due to ascites he has had for most of the pregnancy?
4.       Should fluid be drawn off before delivery? Risk of getting stuck?
5.       Does the adrenaline and squeeze of vaginal delivery give him a head start vs C-section?
6.       Will it help to be planned C-section or induction so that the team who is most comfortable with his delivery is present?
7.       Which week should we plan this? (I want my husband to be present, if delivered at CHOP, he would need it planned, this is not an issue in Greenville, but also, in all of the stories I have heard, I have not heard of any of these babies being born beyond 37 weeks)
8.       He is currently on a study at CHOP regarding pulmonary hyperplasia and the effusions fall under that…I do not mind abandoning this, but would the neonatologists in Greenville or CHOP be particularly more comfortable delivering him than someone else. (I have only met one neonatologist thus far (DR. Ruggeri) who seemed confident, but how does everyone else feel regarding the unknowns and previous medical history seen above, regarding his level of care, and also finding the source of the problem if there are any issues that remain?
9.       Are the OBGYN doctors comfortable with this delivery in both facilities and what are their ultimate feelings.
I know at CHOP he would be born in the special delivery unit with all people present, and I think the same would occur in Greenville.  I do not yet know any neonatologists or OBs at CHOP and have only met with a few of the OBGYNs at Piedmont since this diagnosis, so I ultimately want to know what your feelings are.
I know this is a lot of information and likely you all have your own concerns regarding interventions that I would not begin to know how to address. We truly just want to make sure that we make the best possible birth plan we can, knowing that there are still a lot of unexpected things that can occur, but ultimately want best possible outcome and also to know that we did every possible thing we should have to get that.
Thank you for your time.

Letter that we received back with responses from the doc at CHOP:

WOW, this is GREAT! If the effusions and ascites are resolving then I believe the prognosis is EXCELLENT as your local group has suggested! Still need to deliver in a tertiary setting with great NICU support, but Greenville has great NICU services from what I understand! In cases like this that I have managed, the newborns are pretty much assyptomatic if there is minimal effusions. As much as we would love you to deliver in our SDU, sounds like our colleagues in Greenville should have the pleasure of delivering your trouble making baby! To answer your specific questions:
1. depends on fetal and obstetrical considerations such as abdominal circumference or unstable fetal presentation.
2. perhaps
3. No
4. Depends on how much ascites is there. I would anticipate, but obviously could be wrong, that the abdominal circumference will be smaller that the head circumference at time of labor and therefore would not be a problem. If fetal position or abdominal circumference is greater than head circumference, then would be up to your OB team to decide what the best approach to delivery should be. But, that said, you have a great perinatal team working with you!
5. Vaginal delivery is always preferable, but only in the setting of no evidence of fetal distress during labor.
6. We would probably schedule an induction of labor if not yet delivered at 39 weeks. You will need to discuss with the Neonatal team as to coverage for such a case. At CHOP is not a problem as we have Neonatal teams available 24/7/365 for such cases but this is based on our very high risk populations that we constantly have to be ready for and may not be as available at home. If scheduling coverage for delivery is an issue, then would strongly support admission for cervical ripening or induction of labor after 38 weeks if you are not delivered by then.
7. If the effusions and ascites resolve, no reason you can not delivery at or after 38 weeks. But, that said need to have a NICU plan in place in case you deliver earlier.
8. Not sure. But that said, cases where the effusions and ascites resolve have done very well. This is something we are very comfortable with, but believe that the MFM/OB/Neonatology/Peds surgery groups at Greenville are very qualified to handle. You are in good hands!
9. Cannot say for your Greenville docs, but we are very comfortable, and from what I know of your Greenville docs, they are equal to the task unless something REALLY weird is going on that would very much challenge them and us after the baby is born. Should such occur, can certainly transfer the baby to your local Children's NICU Center, but I really think this is unlikely give what you have described above.
Addendum: I think you are in great hands! You have great MFM support and worse case scenerio the baby can be transfered (unlikely) to a more local NICU facility (world class) near home. Problem for us is that we really hate to loose you as a patient as everyone really bonded and liked you while under our care. BUT, best thing for you and the baby is to deliver at home where things are convenient and family and friends are there for your joyous event! Our loss for sure, but we will all celebrate your child's birth!!!! Personally, I think you and your family are awesome in your committment to this pregnancy and it has been our honor to have been a part of your journey.

Now, before I go on to talk about the Greenville doc responses...I have to comment on the letter above...first of all, this is a testament to the level of personal care the doctors at CHOP is not a usual scenario for a doctor to read AND respond to a long letter like mine with another long email...I feel very bonded with the doctors at this facility, because not only are they the first people to give me real hope and who seemed to be fighting for my baby the way I was, but that they truly have treated me so personally and always felt like they went over and beyond.

Also, worth mentioning is that initially, our Auguest was given a 10% chance at survival. I asked the doctor who wrote the letter above about 8 weeks ago what he thought our odds were, his words were "I don't like to give numbers, but I owuld say better than 10%". Now, as you see, at this point that same doctor (and others) actually call his prognosis "EXCELLENT"....

I got a call on my cell phone from my OB Dr. Twedt on Tuesday and let me know that everyone had conferred and they were excited and she was completely prepared to deliver our boy.

Wednesday at 34 weeks and 1 day, Mickey and I met again with Dr. Dellinger. We found on ultrasound that his lngs show virtually no fluid whatsoever, maybe  asmall sliver of fluid at the diaphragm. His abdomen meansured 38 weeks, which is is actually a little less than it measured last week. His head measured approx. 30 cm and abdomen measured approx. 34 cm. No one thinks this is a problem and we expect it to continue to improve.

Dr.Dellinger agreed with the answers in the letter from CHOP regarding birth plans. The neonatologists at Greenville feel very confident regarding the level of care Auguste may require and with exceptions of something very odd and unexpected, feel up to the task and doubt he will require any transfer (which was my ultimate concern as I would not want to be transferred to Charleston or Atlanta and start all over with new doctors). 

Dr. dellinger also feels that a natural birth is preferrable over C section for many reasons. Lung maturity also apparently happens at 39 weeks, and therefore, unless he decides to make an appearance early, we are planning to wait until 39 weeks. We are planning an induction because we would like to be able to pick the team of people we feel most familiar with...but were also assurred that all of the OBs, neonatologists and MFMs know our case quite well.

This made me feel more confident, because I do get extreme anxiety at the thought of meeting with new doctors. I think this has been such an up and down journey until now that even last week, when I thought I was not going to see Dr. Dellinger and the doctor in office was one I had not met, I seriously broke down and started crying once the sonographer left the room. Fortunately, Dr. Dellinger made it into the office and no one knew how upset I had been...except Mickey, and this anxiety concerns him. I think it is because I am so scared of having someone coming into the room and getting that look of pity or grim discussion I once received. 

So, all that being said, at this point we are planning an induction at 39 weeks which will fall on the second week of February. We are planning the induction in Greenville. 

When people used to ask what Auguste's condition was, I would say "non immune hydrops, but don't go look it up on the internet because it all looks bad"...I did not want people to read the statistics and pity us and start praying for us rather than for Auguste. Now I want to say "go look and see...this is truly miraculous...only God could have done this"

Because it truly is a miracle that Auguste is doing so well. This is the story I prayed so hard for, but I keep having to pinch myself to remind myself that it is true, he is actually getting better on his own and the fluid is resolving.

I know we still have a few weeks to I remain cautiously optimistic, and also give God the glory for what is happening.

I do know that this experience, with all of its ups and downs has brought so many people into my life and has taught me so many things. I look at my sweet baby's little 4D face am so blessed to have him and I realize that I am so very glad that we chose to take the road less traveled, knowing it could lead us down a very painful road...because it truly has been a beautiful experience, that involved facing our worst fears, and giving up any semblance of control, and truly having to trust fully in the Lord to bring us through.


  1. I just wanted to say that I am so excited for you and Auguste!!
    Still praying, and thinking of you often. <3

  2. I read this to D a week or so ago and we were both so impressed with Dr. Johnson's response. Such kind words, candor and willingness to put his opinion in writing seems to be rare in the medical field--particularly, I would think, in high-risk situations.

    And I LOVE this part of your post:
    "When people used to ask what Auguste's condition was, I would say 'non immune hydrops, but don't go look it up on the internet because it all looks bad'...I did not want people to read the statistics and pity us and start praying for us rather than for Auguste. Now I want to say 'go look and see...this is truly miraculous...only God could have done this.'"
    Praise God!