Apr 6, 2013

Up Close and Personal, aka Babies and Strokes, Part 2

I didn't plan to write what came into my lap. Then I had to tell the story. Stay with me on this.

The subjects in this post are two same-sex individuals who wanted a baby. I’ll name them Paula and Melissa to protect their identity. The baby’s name, protecting her identity, too, is Ali. The birth mother? I’ll call Sue. They weren’t from Illinois, and I’ll use it to further protect their future. The hospital also wasn’t in Baltimore. But make no mistake about this story. It’s about an infant who had a stroke. The post “Babies and Strokes,” published December 9, 2012, inspired them to write me an email.

Paula and Melissa had talked about kids for a long time, but in the past 7 years, they never really did anything about it. Then at the end of January, 2012, they received a phone call from Paula’s cousin saying he had a baby for her. He went on and told them about a coworker who had a pregnant sister. The sister already had a 3-year-old who she was barely maintaining. So the baby was up for grabs. They Paula and Melissa called the birth mother and the story panned out. The child was up for adoption. Sue was relieved, but even more so, Paula and Melissa were thrilled.

They spoke on the phone at first, and Sue told them all about herself—a tumultuous relationship with her family and ex-boyfriend, using cocaine the previous summer, drinking excessively, having sex with loads of men. She also told Paula and Melissa that she drank a “handle” a day and used cocaine through the first trimester. Once she found out she was pregnant, she stopped drinking and drug use. She was 6 months pregnant and she had no prenatal care. But they couldn’t completely trust a drug addict. Would you?

An attorney advised them to abandon the adoption, given Sue’s background, but it was too late in their opinion. They made a commitment to each other, and to Sue. They drove to Baltimore Presidents’ Day weekend from Illinois and spent a weekend with Sue and her 3-year-old who was smart, and Sue admitted to using drugs during that pregnancy as well.

So during that weekend, they bought Sue some prenatal vitamins, clothes and shoes (she only had flip flops and it was February). It seemed Sue didn’t have the best upbringing, from Sue’s point of view, and she was starting to turn her life around.

They returned to Illinois, had a baby shower (it turns out a girl was to be born), and painted the nursery. Paula continued to talk with Sue every day, gleaning everything about her and how she was feeling, her family, her daughter, and the men who might be the biological father. Paula and Melissa got very familiar with Sue as did she with them. At times, Paula got nervous about the harm that was caused by drinking and drug use in the first trimester, but Sue always made her feel better by saying she used drugs only a few times. And Paula didn’t do research either because she figured what’s done has been done. Paula and Melissa wanted the baby that badly.

Sue had already gone to the doctor several times and their baby was right on track for a May 1, 2012, due date. On March 29, Paula spoke with Sue several times, and Sue told her she was feeling very physically uncomfortable. The fourth time Paula spoke to her that night, she heard Sue say crudely, “Holy shit. There is blood and all kinds of shit coming out of me.”

Paula advised her to call her doctor immediately or call the ambulance. Instead, Sue called her mother, and then her friend, then Paula again to say she was going to the hospital. Paula called Melissa and told her they needed to get to Baltimore ASAP. The fifth phone call Paula received was from Sue, telling Paula she was at the hospital and they were admitting her. The sixth was from Sue’s friend telling Paula that Sue lost a lot of blood and had a placental abruption, and that she has to have an emergency C-section.

Paula’s first thought was of her soon-to-be daughter. Twenty-eight minutes flew by and then she heard the news. The baby was born at 10:49 pm. Sue was fine and so was the baby, but Paula wasn’t convinced. Tears poured down Paula’s face as she packed a bag. She knew this was a premature birth due to a placental abruption, and the little research she did said that this was a possibility when cocaine was used during the first trimester. Paula and Melissa were on their way to Baltimore.

Once they got to the hospital, they ran in as fast as they could to the maternity ward, only to hear Sue was sleeping and the nurse said they could not see the baby without her. Paula and Melissa told the staff they were the adoptive moms and asked if they could get any information. They were told to wait in the waiting room. Paula’s stepmom who was in Atlantic City immediately came to Baltimore to give Paula and Melissa support.

The hours passed so slowly, like an eternity, and they still could not see their baby. They used the time to their advantage and drove around securing lawyers and getting paperwork so they could get information about their daughter. Paula and Melissa returned to the hospital, only to have the staff reject the paperwork. Sue was up by this time and finally, 20 hours after coming into this world, they met their daughter.

Their hearts raced as they—Sue, Paula, and Melissa—all walked into the NICU. Ali was in an incubator wearing nothing but a hat and diaper and she had tubes and wires coming out of her because she was a preemie. Her arm had been bandaged. The nurse refused to tell them anything more because of the HIPPA laws. They pleaded with the nurse and explained that they were her moms, but all the nurse would tell them is that they needed to provide different paperwork.

Ali was a beautiful baby. She weighed 5 pounds 8 ounces and was 19 inches long with a full head of black hair. Paula and Melissa were allowed a 10-minute visit, but because of Ali’s condition, they were not allowed to touch her. They left the NICU and took Sue back to her room. We found out from Sue’s friend that Ali wasn’t on a bottle, she couldn’t maintain her body temperature, and she had some breathing issues.

Paula and Melissa wanted more answers. They asked if this was a result of the drugs that had been taken early in the pregnancy. The staff didn’t know. Finally, they were able to hold her for the first time 2 days after she was born. She was so little and sweet. Once again, the tears poured down their faces as they kissed her cheeks. She seemed so fragile. They had no idea the fight this infant had just gone through and the odds she had overcome just to meet them, her two moms.

Over the next few days, they would go to the hospital multiple times and hold their baby. They were only allowed to have her out of the incubator for 20 to 30 minutes at a time.

One of the nurses actually called Paula and Melissa on her own time and said, “This call is completely off the record, but I feel so bad for you girls. I want to answer any questions you may have about your daughter. I can’t say anything about Sue but can answer any questions you have about Ali.”

The first question they asked was, “Is she in any pain?” and then they asked, “What in the hell happened?”

She explained that Sue had a placental abruption, which they knew from Sue’s friend. She wouldn’t say what caused it. Then she told them that she lost a lot of blood and that Ali was deprived of oxygen briefly and almost didn’t make it. She explained that she was underweight and that they did not bottle feed her at first because of the early drug use. Her stomach might not be properly formed, so it is a safety precaution that they do with all premature babies. 

She said Ali couldn’t maintain her own body temperature, but hopefully, she would grow out of it. She said that she passed all of her screenings and Ali looked good and she was definitely a fighter. They were so thankful for this angel nurse. They could finally breathe a little easier knowing that their daughter, for the most part, seemed healthy. They had hope that she would be just fine. And Sue was released from the hospital.

They finally had all of their paperwork in place, and the nurses were able to speak with them freely about Ali’s condition. Her breathing was still sporadic and she was eating every couple of hours. Paula and Melissa told the nurses that they knew of the drug use during the first trimester and they were shocked. The nurses were told that Paula and Melissa knew nothing about it, so it was confusion all around.

They visited the NICU many times a day. There were 8 babies in there and all of them had exposure to drugs in utero. They felt confident that their little infant girl would be just fine. By day 12, Ali was out of the incubator, maintaining her own body temperature, breathing regularly, and ready to be released. They still had one more hurdle: Sue had not signed all of the papers so they could start the process to get Ali out of Maryland and home to Illinois. They couldn’t find Sue anywhere. Her friend said that she was drunk—again, but even though they felt sorry for Sue, they had to focus all their attention on their daughter.

After Sue was located, they were finally able to convince her to cooperate. She showed up at the hospital, high on 5 Vicoden and probably still drunk. She signed the papers and the hospital released Ali, Paula, and Melissa, but not before the last test. They did notice a small cyst on her brain. The doctor said it was nothing to worry about and to “just get a follow-up ultrasound in 6 months or so.”

They finally got Ali home to their friends and family, and her nursery awaited her. Paula and Melissa took her to her regular checkups and she had a clean bill of health. At 5 months, they remembered they needed to get that cyst looked at. The results came back and they were advised there was a small change in the matter in her brain and that it would be best to get a MRI, but still nothing to worry about. Their pediatrician assured them that Ali was developing just fine and that it was just a safety precaution.

On November 17, 2012, they had the MRI and on November 23, they had an appointment with the neurologist.

She entered the room and said, “So no matter what I tell you today, Ali is your daughter and you will always love her no matter what information I give you.”

She handed them a picture of the MRI and said, “Your daughter has had a stroke, probably in utero or shortly after birth.” Their collective chests tightened up. They asked the doctor how this was possible; she was a 6-month-old baby. Babies don’t have strokes. Old people have strokes and, on rare occasion, very unlucky younger adults. Babies and strokes don’t go together, they thought.

The neurologist examined Ali and said she had a significant stroke but yet hardly any symptoms. Paula and Melissa said she had severe drooling. At times, saliva just poured out of her mouth. They went through 8 to 10 bibs a day. Also, there was severe choking, multiple times a day, that kept Ali sleeping in their room for the first 9 months of her life. Both of these symptoms were initially misdiagnosed as acid reflux.

The neurologist went on to say that another symptom was the fact that she had trouble controlling her body temperature at birth. She also pointed out that at times, Ali had a crooked smile and her cheek slightly drooped. They stared at their daughter and they couldn’t see it. She also pointed out that Ali favored her left hand. Paula said that was nothing. She was a lefty, too. The neurologist disagreed. She said Ali was using her left hand because of the stroke. The reality began to take hold.

She passed them to another neurologist who she described as one of the best in the country. Fortunately, he was at Children’s Hospital nearby. She referred them to a county program so they could get help before Ali fell behind and her symptoms became more noticeable.

She also told them that Ali was at a higher risk for seizures and that they needed to pay close attention to her if she starts to stare, looking like she was in a trance. They were to call an ambulance immediately, at least for the first seizure. Paula and Melissa wondered if they missed noticing a seizure. They were distraught.

On January 22, 2013, they met their new neurologist. He told them that they were fortunate because Ali’s MRI did not match the data that was before him. He said maybe by the age of 7 or so, if she hasn’t had any seizures, she could show normal development. He said that sometimes, cognitive impairments wouldn’t show up until the age of 6.

Paula asked this doctor, even though it was partially answered, if Ali would grow up “normal.” He told them that all babies are different and all strokes are different. Babies have plasticity that adults don’t have so she may be able, optimistically speaking, to make her weak side strong, and she may be able to bypass the dead area of her brain by rerouting some of the learning.

Ali was assigned to a physical therapist who said she tested at a 10-month-old level. She was crawling when they were told she wouldn’t. Next came the speech therapist who told them Ali tested at a 6-month-old level. Her speech and understanding of speech were delayed. The occupational therapist who tested her said she had fine motor skills that verified Ali was right on track. They saw a hematologist who said all of the blood work came back normal.

In an email to me, Paula said, “We are going to register her for school on her first birthday so she can start in the fall. She will have one teacher, a teacher’s aide, and about 7 other kids in her class. We will have home therapists which come to the house regularly to help teach us various exercises and things to improve her speech, drooling, limb control, and anything else we need help with.

“We feel like for everything new we learn, there are a hundred things that we don’t know. We don’t know what the future holds for us--seizures, no seizures, full recovery, or partial. We do know that her biological mother was right when she said she was supposed to have this baby but not keep her. And no matter where Ali’s journey takes us, Melissa and I are better people because of her.”

Sue’s behavior was foolish and reckless—the drugs, the alcohol, the sex—just for moments of selfish indulgements. And Ali? Now, there’s the big question mark. I don’t know about how Ali would do physically or otherwise. Neither does anyone else.

But I’ll tell you one thing: Paula and Melissa are intent on doing the best for Ali. Paula’s stepmother, who is my friend, told me so.