Breaking Bad News: Part 2
Below you will see one of the handful of "Baby E Updates" I sent to close friends and family upon learning the news about my abnormal ultrasound. As you will see, I did my best to deliver the news as objectively and clearly as possible, allowed room for questions while reinforcing that we may not know answers, and always ended on a personal and positive note. Looking back, I'm glad I wrote these. There was so much information coming at us from so many directions, and these notes helped me to keep it clear. I was also able to stay very focused on what I wanted as far as a birth plan and I could assume control of at least delivering the information at a time when I felt I had no control at all.
Dear Friends and Family,
With the arrival date of Baby Edmunds approaching, we wanted to fill you in on the latest information we’ve received. On our 20 week Ultrasound, Cristina’s doctor noticed a spot on the kidneys, and set up a follow up ultrasound with high risk doctor. While we were hopeful it would be nothing, it turns out that Baby E has abnormal kidneys. We will give you all of the information we currently have, but please know that we do not have answers to everything yet, and most likely will not know more until the baby is actually delivered and is assessed by pediatricians.
Here is what we do know. The baby’s kidneys are both enlarged and abnormal. The right kidney has one large cyst and the left has a small cluster of cysts. This kidney will most likely not be of use after the baby is born. The left kidney should be fine, and many people function with one kidney. According to our ultrasounds, the kidneys are functioning right now as evidenced by a normal amount of amniotic fluid. The other positive news is that all of the other organs are developing normally. These two factors are very important and very good pieces of the puzzle. Once the baby is delivered, he or she will be assessed by pediatricians and hopefully be given an actual diagnosis. (We do not have a solid diagnosis just yet). There is a very high possibility that the baby will have to be transferred to Children’s Hospital at some point. Our OBGYN is hopeful that the transfer will not have to happen immediately after delivery, as baby’s lungs are developing normally. The main reason to rush the transfer would be if the lungs were underdeveloped and baby would need assistance breathing. This does not look like it will be an issue.
Should the baby be transferred while Cristina is in recovery, whether from a vaginal delivery or c-section, her doctor has assured her that she will be released as quickly as possible in order to be with the baby. Although the right kidney is not likely to function properly, as long as the left kidney works the baby will not need dialysis or surgery to remove the right kidney or for a transplant. The symptoms so far do not fit a specific diagnosis.
Cristina will be seeing her OBGYN every two weeks from now on, and high risk does not need to see her again until 6 weeks have passed. This is reassuring because if the news were more devastating, he would want to see us much sooner and with much more frequency. In the meantime, we will be meeting with neonatologists at the hospital in the beginning of January. We are hoping to get more information on what this all means and all possible courses of action following delivery. Baby E and Cristina are under great care and closely being watched. While there are no interventions for Baby until delivery, we are educating ourselves as much as possible to be prepared for any scenario. That being said, if any of our family members have had or do have kidney cysts, please let us know so we can inform our doctors. Family history will be important in diagnosing the issue.
While the news is not ideal, there are many positive factors surrounding it. Please keep us in your thoughts and prayers. We are so grateful to have such a large group of family and friends sending so much love our way. Baby E is already lucky to have all of you in his or her life. If you have any questions, feel free to ask; however, we can’t promise that we will have answers. We can promise to keep you updated as we get more information! We are very excited for the arrival of Baby E and can’t wait to meet him or her. We know that he or she likes to suck its thumb and move around - a lot. Baby has been a squirmy little thing since day 1! He or she likes when mommy eats, sings, and lies down. Baby likes to dance when daddy sings and plays guitar - especially calypso music.