Rosa

Rosa was not your typical client.

One of the wonderful things about my research job is the opportunity to meet the amazing doctors and nurses who work with the babies at the Brigham who are born with conditions that make their new lives very difficult. These individuals are so compassionate and recently started a Palliative Care Program for the babies who may not survive past infancy because of a prenatally diagnosed condition. Back in October I contacted one of the Nurse Practitioners in the department of Maternal-Fetal medicine and offered my doula services for free for moms who are faced with delivering a baby with a known birth defect. She responded immediately that she had a mom due to deliver in the next few weeks that could really use the help of a doula.

Rosa was a 21 year-old woman from Puerto Rico who was pregnant with a baby diagnosed with Alobar Holoprosencephaly-- a severe brain malformation that is often fatal. Along with this difficult diagnosis, Rosa herself had a very difficult medical and family history. Because Rosa had a history of sexual abuse, severe depression and some learning disabilities the doctors and nurses were concerned with her ability to cope with the birth of a very sick infant. I was warned that she presented with a very flat affect and never laughed or cried. Admittedly this would be a tough client. I mulled it over for a day...would I be able to keep it together enough to help enhance this woman's birth experience?

The next day I agreed. I would help Rosa when she came into the hospital. It wasn't long. Three days later I was at her side in her birthing room. I was called when she was in active labor and her epidural had already been placed. She spoke only Spanish (and her nurse spoke no Spanish) so my initial job was to relay messages to her nurse--what she was feeling, was she comfortable, did she need anything, etc. Rosa and I chatted for awhile, she was very comfortable with her epidural and her boyfriend looked so worried and was not speaking at all (I think she was just so relieved she had someone to talk to). We even joked around a bit and to the great surprise of her nurse- I got her to laugh! After awhile she wanted to talk about the baby--would she be born alive? would she be able to hold her? what would the doctors do to help the baby? I tried my best to answer her questions but really I did not know what to say much of the time.

About two hours later tons of doctors and nurses were coming into the room. Specialists from fetal medicine, the neonatology team, ob/gyns and their interns, respiratory therapists, pediatricians... it got very crowded. Turns out the Spanish translator who was supposed to be present during the whole labor decided not to come in that day so that job fell on me. I translated for every specialist and every nurse while trying to stay focused on Rosa and her needs. To be honest it was exhausting and exhilarating all at once.

The baby's heart rate began to drop to the point where the doctors would have decided on a C-section in a normal case. Since this baby had such a poor prognosis, however, they decided to let mom labor longer than usual and really try for a vaginal delivery so that she could spend the next few days with her sick baby, not recovering from surgery. About an hour later mom was pushing. The special photographers also came into the delivery room to take pictures of the baby right after she was born in the event that she didn't live past the delivery room.

The pushing stage actually went very quickly and soon Rosa was the proud mother of Daniela, a 5lb8oz baby girl. Although Daniela did not cry immediately, the neonatology team took her over to the warmer and stimulated her for a minute and she let out a nice strong cry. As Daniela cried, I looked over at Rosa who also had tears streaming down her cheeks. I congratulated her on her beautiful baby and she sobbed intensely.

Sadly Daniela's strength did not hold up very long and she was unable to breathe without oxygen after ten minutes. The neonatologists asked me to confirm with Rosa that she wanted them to intubate the baby. After I explained the process of intubation to Rosa and assured her that it would not hurt Daniela, she agreed. After intubation Rosa was allowed thirty seconds with the baby on her chest. Just enough time to give her a kiss on the top of her little head.

The chaplain entered the delivery room and I translated the baptism of Daniela right there with dad by my side and Rosa still on the bed. It was a tearful baptism for all twenty of us in the room. Shortly thereafter, Daniela was put into an isolette and wheeled to the NICU.

The whole experience is one that I will never forget. It was the most intense experience of my life and I felt blessed to be a part of it. My heart goes out to Rosa and her family and my thoughts are always with Daniela who continues to live against the odds of medicine.