Sunday, May 19, 2013

Cherish and Jewel: Babette’s* Story

I met Babette last summer when I was given her referral by our agency for prenatal education, support and doula care. We get referrals for low income women many of whom are teenage and single moms and recent immigrants. Babette is a nurse from Ghana, Africa with limited English. Her husband has a master’s degree in economics. They speak Dagbani. They had been in the U.S. less than 6 months when she became pregnant with twins. She had recently been advised to agree to have an amniocentesis test which showed an abnormality with (then) Baby A. An omphalocele was viewed on a prior ultrasound just before her 6th month. Put simply, this is when part of the intestine and sometimes other organs like the stomach or kidney grows outside of the abdominal cavity and the body. We could see this one next to or on the umbilical cord at the navel on this baby during the ultrasound. The results from the ‘amnio’ had not come back yet, but the hospital testing unit’s doctor advised Babette that Baby A had a serious abnormality which might also involve Trisomy 18, and other genetic disorders and she was told that because the babies were possibly identical twins, that Baby B most likely had genetic anomalies too, and -- all in the same breath -- they were offered early termination of the pregnancy, before the studies had even come back. She might or might not be carrying two very handicapped babies but nothing had proven anything yet.

Babette was understandably seriously depressed when we met for the first time and asked me if “the hospital would be mad at us if we don’t abort” as they perceived they were being advised. I told them no, that they had every right to carry to term if that was their wish and that even no action was an option for them, letting nature take its course if they don’t live, or dealing with a disability after birth. I told them they could also switch doctors or even hospitals, that those were their rights in our country. I also apologized for the hospital’s actions. I told them that I strongly disagreed with the way it was presented to them, especially since the studies had not yet confirmed anything at all, only that a small omphalocele was visible on the ultrasound on one baby only. They were both greatly relieved and asked me to accompany her to all prenatal visits after that, which I did. I often ‘translated’ the medical reports as they came in and did home visits in between to address other concerns like finding cribs and so on. At one point we visited a dermatologist as she had a severe case of pregnancy-induced acne which left permanent scarring on her face. This was also very distressing to her. Their little 4 year old boy was perfectly OK so I wondered that the geneticist said they very well could have a hereditary syndrome going on. I am not a geneticist, nor a doctor, but the way this case was being handled seemed particularly cruel and uncaring to me. Would they treat me this way in her place?

When the studies came back, they didn’t tell us much more than we already knew, except that any form of Trisomy was NOT indicated, nor Down Syndrome but other concerns continued. They told us that there was an 80% chance that the girls were identical, they could not be 100% sure, so they may not be mirroring the same problems, though they persisted in their theory that Baby A might be similarly affected with whatever they might find wrong with Baby B in the future. Babette refused all further tests from that point on except for regular ultrasounds. After that first devastating news, Babette had gone home and Googled the list of horrors the doctor predicted as possibilities. She was alone that afternoon as she watched photo after gruesome photo of babies with all the terrible complications that the doctor had named. An educated woman, Babette had read everything about each lethal or fatal anomaly: the expected life span of each disorder, the complications and probability of incidence of each syndrome.

In the circles of higher academia I have noticed a startling new trend: People in the field are questioning, some for the first time, the connections between the rocket science levels of medical technology that now makes tests available that can even tell us if our as-of-yet unborn child might have a gene that can elevate his/her probability of seeing symptoms of x, y or z diseases by the time they turn 40, or 20, or 5 years old. Even more disturbing are the findings by these scientists and doctors that conclude that once a parent has been warned that such and such might exist in this particular baby’s DNA that their parenting styles can actually change. No longer is this a much-anticipated addition to their family, but rather a huge problem. Their lives stop at this unforeseen juncture; they delve into their own extensive research on the intruder. They no longer attend the local mothers’ groups to compare baby teeth and diapers but rather join support groups with other parents dealing with the same disabilities. And I would wager here that prenatal bonding too, looks very different, even before baby is born. Babies are treated no longer as lovable, huggable, adorable little clones of our selves but suddenly parents become experts on every congenital or hereditary anomaly affecting the human race. I think pity takes the place of the funny faces and absurd sounds new parents make at their newborns. And fear. Hardly the stuff conducive to continuum bonding.

Some of these scientists and physicians are aware of this redirection of attention by parents and the possible devastating effects on babies. In her recently released book, Testing Baby: The Transformation of Newborn Screening, Parenting, and Policymaking Rachel Grob pleads this case on behalf of our children. Another equally brilliant work is called, Saving Babies? by Stefan Timmermans and Mara Buchbinder, in which the authors question whether the benefits of these screenings outweigh the stress and pain they sometimes produce, especially given the high number of false positives – inaccurate results that can take a brutal emotional toll on parents before they are corrected, if ever. Finally the American Academy of Pediatrics together with the American College of Medical Genetics has put in place a statement to curb the testing of children that is used to identify genetically inherited childhood diseases and those that can occur when they become adults. They further recommend that doctors should discourage testing in children for adult onset genetic disease, especially if there is no treatment to give during childhood to prevent the disease, siting that the screening tests often don’t provide definitive answers, but whether they do or not,  this may only lead to anxiety and more questions.

As we neared her due date Babette expressed the wish that she had very much hoped it could be a VBAC but was scheduled a C-section for 4 weeks early. Baby B had dropped lower than Baby A and were re-tagged at this point, so the baby with the omphalocele would be born first. The doctors were concerned that one of the babies didn’t appear to be practicing her breathing in utero, which signals immaturity and the possibility that if she is not, that she may be better off outside of the womb where she can get their help, though they also could not tell us if she never practiced breathing, especially if she had been sleeping during the ultrasound that particular day. To get a definitive answer as to the maturity question, they now proposed another amniocentesis to assess the overall lung function of the babies, but particularly now Baby A. Babette was understandably worried by all of their speculating. She asked me what I thought, and I told her that this one wasn’t up to me. Perhaps the doctors were right in trying to avoid additional problems, or maybe doing nothing would be right for her. I assured her I would support whatever she chose. So she went with the test after being informed of all the possible complications from another amnio, though somewhat less risk than doing it in the first or early 2nd trimesters. After all that, the test told us that the babies’ lungs were thankfully mature so they didn’t need to be born early.

But by evening, Babette called me and told me she was ‘leaking.’ The amniosentesis had ruptured the bag of water and it was not going to reseal itself back up. So much for letting them go to term. A C-section was deemed safest at this point by the powers-that-be, though when nailed down one of her doctors did admit to us that there really was no reason not to try a VBAC. Excited by this tiny hope, I asked Babette if she was up to that. She told me she was tired. Tired of being pregnant. Tired of the questions. Tired of false hopes. Tired of imagining the future: the possibility of her being a prisoner in her dusty housing project, stuck at home year after year with two very sick babies and no hope of ever having a career again, or of living the life they had dreamed of having in America. She wanted to get it all over. She didn’t care what they did at this point. She didn’t have any energy left.

I attended her birth on November 12th, 2012. Both babies had acceptable Apgars and were doing exceptionally well after birth. The ‘well’ baby, now Baby B, latched and nursed well in recovery. I went with Baby A (now called Jewel) at the parents’ request first to the NICU and then to another children’s hospital the next day where I stayed for surgery at 24 hours and the first few days in the NICU there. Babette stayed in the first hospital with Baby B, whom she called Cherish. The father stayed with their 4 year old boy – a delightful little guy who climbs into my lap without any invitation, sings to me in Dagbani and thinks I am his grandma.

At the children’s hospital and also later at her hospital’s neonatal unit I asked the neonatologist if he also noticed some of the same markers I observed in Jewel. (Incidentally, Babette told him after the birth about his hospital telling her that she should/could abort these beautiful babies. He appeared to be very disturbed by this and apologized. He also strongly encouraged her to go to the patient advocates and register this complaint.) He agreed with what I was questioning and said he had already sent more blood work to the genetics lab but hadn’t told the parents this. I agreed to also wait and not tell them yet what my concerns were for Jewel. The tests came back confirming a diagnosis of Beckwith-Weidemann syndrome which occurs in about 1 in 15,000 births. I had done some research and the next time I visited Babette and Cherish I noted similar visual markers in Cherish – which I didn’t mention to Babette. I called the doctor back who assured me that Cherish was fine; that twins rarely both carry it, and that he did not feel that testing her was warranted at that time. 

At about 2 months old, Babette asked me to go to a follow up visit at a pediatric clinic (not one of the hospitals they had already been to) with the family. A pediatrician saw us and was very happy with both babies’ weight gain, feedings, etc. I asked this doctor to refer Cherish for a genetic work up at the university hospital (over the other doctor’s head on my part) which he readily agreed to after I listed the anomalies I thought I was seeing and he further examined her and saw also. I told the parents I wanted to be sure so that any early interventions that might help her would be in place. I tried not to convey any deeper concerns. They agreed and were referred and the blood work for Cherish was sent in. The parents were recently called and told that it is confirmed that Cherish does indeed have the same syndrome as her sister Jewel, though her chances were also only about 1 in 15,000.

Even before the birth, Babette confided to me that she felt she was doomed to spend the rest of her life in the housing project with 2 severely handicapped babies. She had hoped to go back to work after this pregnancy. She had planned to first become proficient in English and then apply to graduate school here for any credits she might still need to transfer her degree from Ghana. I applied for a grant and got an English independent study course for her to do at home which they have both since completed. I explained that she can find daycare for her babies and will be able to go back to school and that in the U.S. her babies will go to school even if it is an adapted program. I also got her husband the resources and he is in the process of applying for SSI for both babies (hopefully to pay for respite care in the home and/or day care). Their application for a visa for Babette’s mother to visit and help with the babies was recently denied by U.S. Immigration. The couple questioned the denial and were told, "but she might decide to stay illegally then." They tried to challenge the decision, but didn’t get any further. We have found a lawyer at this point who feels confident we can get grandma here on a visitor's visa and will help us re-apply.

I last visited the family at Christmas time. They seemed happy, but I felt that Babette had not bonded as well with Jewel who is having problems breathing because of a very large tongue that the hospital has recommended reduction surgery for. Babette is very unsure about agreeing to the surgery. At one point she and I were alone in the kitchen and she said, “I just want to go back to Africa and leave the babies with him. He can put them in daycare.” I asked if she just needed a vacation or did she want to run away? She said, "both."

I recently spoke with a clinic also located at the university here that addresses postpartum depression. I am very concerned about Babette. To back up a bit, when we went to the OB testing unit at the hospital week after week earlier in the pregnancy, she was routinely asked at each visit, “Are you depressed?” This became a running joke between us, actually. She didn’t think she was depressed. She should know – she is, after all a nurse and has a degree. She told me that the babies were in God’s hands and that she was happy she had been blessed with two. After their son was born, they had planned to only have 2 children, even before this pregnancy. She said God would take care of them, even if they were handicapped (the family is Christian). Once when I called her up and asked if she was depressed, we both cracked up laughing. Now, I realize we may very well be in hot water as the reality of these two sweet, beautiful little babies is sinking in.

*All names and any identifying characteristics have been changed to protect privacy

COMING SOON: This and other stories will appear in one of these books soon: Call The Doula! a diary© and Stone Age Babies in a Space Age World: Babies and Bonding in the 21st Century© pending by Stephanie Sorensen

Life only demands from you the strength you possess.  
~ David Hammarskjold 

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