Prologue: This story starts at the beginning of my awareness that my second pregnancy would be complicated by alloimmunization and HDFN (terms I didn't learn until very recently!). I also want it to begin with the real-time report that literally, as I am writing this, my 27-year-old son Kyle just texted me with news of his acceptance into a graduate program at Harvard University. This gives away the happy ending, but on December 28, 1992, we had no idea how our story would turn out.

 

I checked my watch and straightened the paper gown as I waited for the nurse to return to the examination room. I had challenged her when she greeted me 20 minutes ago with news that, at this 28-week appointment, it was time to get a RhoGAM shot. “You remember. Just like your last pregnancy,” she cajoled. Blood draws and injections predictably cause me to lose consciousness and then seize, thanks to a hereditary neurocardiogenic condition. I remembered shots. And I did not remember getting one at this point in my first pregnancy. “According to your chart, your blood type is Rh negative and your husband’s is Rh positive. So, you would have received two shots – one at 28 weeks and another immediately after your daughter was born,” she stated. Two shots? There was no way I would have forgotten two shots, especially one that followed a very memorable 36-hour labor. She offered to retrieve my file from that pregnancy and closed the door behind her.
 

It was 1992, so I had no smart phone to consult while I waited. No way to reach my husband to check his memory. Was I previously aware that our blood types were incompatible in some medically significant way? If they were – and if I had not received those necessary shots – was I supposed to know what that meant? Did it pose a threat to my health? To my baby’s health? My mind raced. What was taking her so long?
 

Finally, she returned; her demeanor and expression were subdued compared to our earlier encounter. “We’re going to go ahead and give you the RhoGAM shot now, and Dr. Oliver will be in shortly to examine you and talk with you about it.” She recorded my vitals and we took precautions that help reduce the likelihood of me passing out. Fortunately, even though my nervous system was already on high alert, I remained conscious. Her attempt to make small talk led me to think she had been instructed not to say anything further about my past or current treatment. It was the week between Christmas and New Year’s, so light chatter easily covered the observation period that followed the injection.
 

My OB/GYN entered the room with holiday cheer, no obvious sign of concern in his words or on his face. After some general questions about my health and how the pregnancy was going, he got to the matter. “You were right. We did not administer RhoGAM at either point in your first pregnancy. That is done as a precaution in these circumstances and should not pose any problems for you or the baby. I will consult with some colleagues in perinatal medicine to determine what additional monitoring we should do to make sure you and the baby are perfectly healthy. A lot of offices are closed this week, so we’ll follow up with you next week.” If he said anything after that, I don’t remember it. I’m sure I asked questions, but none that yielded information to change our next steps.
 

I got dressed and walked to my car. My three-year-old daughter’s day care closed in two hours. I could pick up Lauren earlier than usual or go home or to a library to try to figure out what this all meant. I headed home to call my husband, Brad. He was in a meeting, so I left a message asking him to come home as soon as he could. I turned on the stereo, loud, and pulled my copy of “What to Expect When You’re Expecting” off the bookshelf.
 

Consulting the book’s index, I flipped to sections that related to Rh factor and RhoGAM. There wasn’t much information provided and even less about implications of failing to intervene during prior pregnancies. Yet there was enough information to suggest, counter to my doctor’s assertions, it was a potentially serious situation.

 

The phone rang. Expecting it was Brad, I skipped straight to, “Something happened at the doctor’s office today. Please come home.” A woman’s voice stopped me. “This is Dr. Oliver’s office. Is this Kim? He would like you and your husband to come in at 5:30 today if possible.” Less than an hour ago he waved me off with a week’s hiatus from further discussion. It must be serious.

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The waiting room was empty and the lights were low. The receptionist led us back to his private office with her coat in hand; she wasn’t staying. I liked this doctor. He had taken good care of us during my first pregnancy when my neurocardiogenic condition posed problems late in the third trimester. We even had his name – Andrew Oliver -- on our list of boy names. I liked the idea of calling our son “Drew” and his initials being “AOK.”
 

I wanted to believe Dr. Oliver’s earlier reassurances and hoped we had been called back to his office for a second dose. However, prior experiences in the gray areas of medicine and my work as executive director of a patient advocacy organization taught me not to be complacent with the kind of superficial information offered hours ago. I pulled out the list of questions I had made in the hours prior.

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“Kim, as we discussed earlier, your questions about the RhoGAM shot led us to look back at your earlier records. I had a chance to go back through them more carefully this afternoon and to make a few calls to specialists. I wanted to tell you right away about what I learned. When you were pregnant with Lauren, your blood type was mistakenly recorded on the inside cover of your chart as being Rh positive. The lab report in the file correctly stated it as Rh negative, so it was a clerical oversight on our part. Unfortunately, we based your treatment on the handwritten notation, and because of it, you did not receive the two RhoGAM shots you should have.” He explained that RhoGAM was developed to prevent women from developing antibodies from mixing of positive and negative blood types at delivery that could pose a threat to future pregnancies. Since coming into use in the 1960s, it had all but eradicated the problem it was designed to solve, and there is increasingly less experience dealing with a situation where a woman mounts an immune response to her baby. He continued, “I was able to reach a colleague at the hospital to help me understand what additional information we need to gather before we set a treatment plan.”

 

“First, Brad, we need to test your blood to see if you are homozygous for the positive Rh factor. I can take a sample from you before you leave. We can also get Lauren’s blood type from her pediatrician; if she has Rh negative blood, that would mean Kim has not been exposed, at least through that pregnancy. If Brad is homozygous and/or if Lauren is Rh positive, then we need to test the baby’s blood levels for antigens. The only way to do that is through amniocentesis, which is performed outpatient at the hospital due to a small chance of injury to Kim or the baby, as well as the possibility of triggering premature labor. If amnio is necessary – and we don’t know yet that it is – we’ll have to repeat it every few weeks, depending on the results. Each time you’ll need to prepare for the possibility that we might have to deliver the baby. If the levels of antigens in the baby’s system rise to a dangerous level, we’ll have to attempt to give a blood transfusion in utero or deliver early. There are risks with both, but let’s hope we learn some things along the way that make those steps unnecessary.”

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My fists tightened and blood coursed through my temples. It was a lot to follow, a lot to absorb. How big were each of the “ifs” he positioned at the front of every sentence? What was the piece of information most likely to vault us out of this scary set of possibilities? How long would it be before we knew whether we were dealing with the light or heavy version of this scenario? It was then that my mind returned to one phrase – blood transfusions. HIV and lingering risks to the general blood supply were prominent medical headlines. “Should we bank blood?” I asked. “Let’s get some other information first and see where we are, but that may be a good idea down the road,” he replied.

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“I know your other medical issues make these additional procedures more challenging. I have every reason to believe you will give birth to another healthy baby who will thrive. However, it would be unfair for me not to tell you that your child may encounter some health and development problems. Let’s just stay focused on what we can do next to maximize the chances of that healthy delivery. I am truly sorry that this has occurred, and I will see that you and your baby get the best care possible all the way through.” He looked across the desk with a contrite expression in search of our forgiveness. I took the list of questions from my lap, crumpled it in a ball, and shoved it into my pocket. Brad said simply, “Let me give you the blood sample you need, and we’ll go from there.” I rose and waited in the hallway while Dr. Oliver drew Brad’s blood. He saw us out the door with apologies and a faint attempt at wishing us a “happy new year.”  

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Before ringing in 1993, we would learn that Lauren’s blood type was positive, and Brad was a homozygous carrier of RhD. I had the first of the three amniocenteses that would be required. Offered the opportunity to know the baby’s sex, we learned that we were having a boy. His hemoglobin levels were low but still in the “normal” range – a hopeful sign. Even so, that night we struck Andrew Oliver from our list of baby names. Things were not AOK.
 

 

Weekly sonograms showed normal growth and activity patterns. Results from the second amnio did not set off any new alarm bells. I had lined up friends with appropriate blood types who were ready to bank donations, but it was difficult to get clear instructions from the hospital. They were used to dealing with autologous donations in preparation for surgery on a date certain. They couldn’t guarantee in an emergency situation the specially banked blood would be delivered to the NICU. They also couldn’t figure out who or what to charge for collection, testing, and storage. Both Dr. Oliver and the perinatologist downplayed the need based on test results, so I let it go.

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In fact, within a month of my March 15 due date, Dr. Oliver made a prediction: “You’re on track to give birth to a healthy 7½ pound boy at full term. We’ll do one more amnio next week just to be sure, but things are looking very good.”
 

Levels shifted dramatically between the second and third amnio, and a decision was made to schedule an induction at 38 weeks to avoid further risk to our son. On the last weekend of February, my mother arrived from out of town to help with Lauren. A major snowstorm and extended power outage provided a dramatic backdrop for our final preparations for her brother’s arrival.

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Early on the morning of March 1 we drove to the area hospital with the best-equipped neonatal unit. I was admitted and we were watching local news in the labor suite when Dr. Oliver arrived in good humor. “Today’s the day! I promise you will not go home without a baby.” It seemed an odd commitment to make, but his confidence in a problem-free outcome of this pregnancy had grown stronger each week and I was desperate to believe him. He consulted with the labor nurse on the plan to administer prostaglandin gel to get labor started, followed by IV Pitocin if dilation didn’t progress on its own by a certain time. He waved goodbye and said he would be back at lunchtime to check on us.

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By dinnertime, an increased dose of Pitocin had not produced sufficient progress. Dr. Oliver called the desk and told them to stop the Pitocin so I could get a good night’s sleep. “We’ll try again in the morning,” the night nurse relayed.

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At 7 a.m. the morning shift nurse started the drip again. It produced labor pains, but another day passed with only gradual dilation, to 3 mm. At dinner time, Dr. Oliver came into the room. “It appears your body wants to hold on to this little one a bit longer. I am going to send you home tonight and ask you to come into the office each day for a sonogram. If we see something concerning in the baby’s activity, we’ll induce again or schedule a C-section.” Tears welled in my eyes, and I bit down hard on my lower lip to keep from sobbing. His promise from the previous day rang in my ears. At multiple points along the way, we considered getting legal advice or switching to another OB/GYN, but we ultimately decided to stick with the doctor whose self-interests were aligned with our hopes for a healthy baby. Now I felt blindsided by his decision to send us home and questioned the wisdom and safety of it. Nearly two weeks had passed since the third amnio showed signs of increasing fetal distress. Would a daily sonogram be sufficient to detect serious problems? After a little more discussion about the encouraging data readings from monitors still tracing the baby’s condition, we agreed to go home and return to his office the next afternoon.

 

Three office sonograms through the end of that week and three more at the beginning of the next week gave no indication of added trouble. The baby was active and leaning hard on my ribs during my visit on March 11, a Thursday. “Assuming you don’t go into labor first, we will admit you on Monday and induce. If the labor doesn’t progress, we’ll do a C-section,” Dr. Oliver said. Monday was my original due date. At least one of his earlier predictions – that I would make it full term – had come true. I asked about the baby’s measurements. “Looks like 7½ pounds, maybe a little bigger. Everything is going to be fine,” he added. “Let’s hope so,” I thought to myself.

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Monday morning began much the same way the Monday two weeks prior had started – being admitted to a labor suite and with application of prostaglandin gel followed by Pitocin by IV. By late morning, the contractions were becoming more uncomfortable, and I noticed the labor nurse paying closer attention to data coming off the baby’s monitors. Others were called in to look at the data strips, including the perinatologist. At noon, Dr. Oliver came in and spoke to us with business-like efficiency. “We’re concerned about how the baby is responding to contractions. His heart rate is weaker than we’d like, and I have scheduled an emergency C-section. The team will get you ready for surgery and within the hour you will be holding your son.” As scared as I was by this news, it also brought some relief. Finally – certainty about something.
 

Brad made calls to our families while they prepped me. My mother had taken Lauren to day care that morning and was with us. Before I was taken into surgery, Brad and I consulted one last time about a tentative decision we’d made in the event a C-section was needed – for Dr. Oliver to perform a tubal ligation before he closed the surgical site. We agreed to go ahead with that plan, as long as the baby’s APGAR score was normal at 1 and 5 minutes. We wouldn’t have more time than that to decide. If the baby immediately exhibited serious problems (or worse), we didn’t want to make such a “final” decision under those circumstances.

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The surgical room was small and brightly lit. I remember feeling crowded by equipment and medical personnel. Brad and my mother watched through a small observation window into the room, and I was told they could hear what was going on. I felt a lot of pressure as gas filled my abdomen, and organs were rearranged to get to the baby. Dr. Oliver held the wriggling baby above the drape that hung between my head and body. “Here is your son!” he said before passing the baby to the nurse at his side. “Five pounds, 11 ounces. 19 inches long. APGAR is 7, with some jaundice” she said. His cry seemed a little weak, and his weight puzzled me. Almost two pounds less than the sonogram measurements indicated five days ago. Dr. Oliver turned his attention to me. “He’s a little smaller than we expected and will need some light therapy in the nursery, but otherwise things look good. We need to get you closed up before you can hold your son. Would you like me to do the tubal ligation?” I twisted my neck to confer with Brad through the window. He motioned with a cautious nod, and I replied to Dr. Oliver, “Yes, go ahead.”

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When I finally got to hold my son in post-op, he felt so tiny in my arms. He was small by any full-term standard but especially compared to three-year-old Lauren. Ten fingers. Ten toes. Flexing limbs. Grimacing face. I watched him breathe in and out and felt that, for the first time in months, I too could breathe.

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They took him to the nursery and moved me to a regular room on the maternity floor. Not long after we got settled, a nurse wheeled the bassinet in. We took turns holding him and marveling at his small size and his mighty strength. What a tough journey he had survived. They wanted me to try to breastfeed right away to help with the jaundice; he had already spent time under the phototherapy lights while I was in recovery. The nurse helped position me; my lower body was still mostly numb from the surgery and movement was difficult. She removed the pulse oximeter from my finger and placed it on our son’s teeny big toe. A machine on the table behind my head sounded, and I caught a look of alarm on the nurse’s face. “We need to get him back to the nursery to check his vitals,” she said as she scooped him up and rushed out.

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Brad followed her down the hall but was shut out at the nursery door. He asked that Dr. Oliver be called to explain to us what was going on. When Brad returned, I made a request: “It’s time for us to give our son a name.” I needed something to feel real in this very unreal set of fast-changing circumstances. We agreed quickly on “Kyle Patrick,” a name that had risen to the top of our list in recent weeks.

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The perinatologist knocked and entered the room. “I am sorry to tell you that your son’s condition has rapidly deteriorated. His blood does not have sufficient oxygen due to the antibodies circulating in his system, and he’s struggling to breathe. We are moving him to the NICU and making arrangements for an exchange transfusion of blood. The next few hours will be critical.” I spoke up. “We have named our baby Kyle. Please call him by his name.” I wondered when – if – I would get to hold Kyle again. And I thought immediately of the additional risks he’d be exposed to with this blood transfusion. I instantly regretted not pushing harder to bank our friends’ blood donations.

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Hours passed with mostly procedural updates from various hospital staff. Nurses checked my incision site and assisted me to sit up in a chair to help move the gas out of my belly. They helped me pump my breast milk, which they said would be given to Kyle in the NICU through a tube. Darkness fell. When the transfusion was completed, Brad was led to the NICU for a 10-minute visit with Kyle. The nurse told me I could see him later that evening, but I would need to be able to walk 20 yards from the hallway door through the unit and back again; there wasn’t enough space for a wheelchair. In preparation, my mother helped me to stand and shuffle around my bed. I felt like my insides were going to split open, but I was determined to see Kyle.

 

The NICU was dark when I was finally permitted to go in. I put a scrubs gown over my nightgown and leaned hard on the nurse’s elbow as we navigated between the individual incubators and the various types of equipment attached to each one. I wasn’t prepared for the sight of so many critically ill babies and the way staff and family marked growth or date milestones with colorful signs and small mementos. I wasn’t prepared to see Kyle’s tiny body connected to so many tubes and wires, confined to a plastic dome bathed in therapeutic light. I wasn’t prepared to feel even more helpless than I had felt over the past 12 weeks when he was still inside my body.

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A NICU fellow quietly approached me to introduce himself. He reported the transfusion had gone smoothly and pointed out what each of the leads and tubes was for. He reviewed data collected over the past few hours and said Kyle’s body appeared to be showing a response to treatment. My 10-minute visit was up. Although earlier I was told not to expect to be able to hold Kyle, it was still hard to leave without more contact than stroking his back through the hole on the side of the incubator. I made a mental note to ask Lauren to make a picture for his bed.

 

The night and next day passed in a blur of slow steps toward recovery for both Kyle and me. That evening, Lauren and my mother came to the hospital. It was St. Patrick’s Day and she bounced in with a green balloon and big smile. She knew I had “stitches” and gently climbed up on my bed. We settled into a snuggle while she caught me up on her activities over the past few days. We talked about Kyle and why she couldn’t meet him yet. “I’m planning a Little Mermaid birthday party for him when he comes home,” she reported. I thought of the family celebrations hosted in the NICU. We might be one of the lucky families to require that level of care for a short time.

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The next day, Kyle was strong enough to move to the nursery. It was briefly suggested that I would be discharged that day, but I leaned hard on Dr. Oliver to write an order for me to stay one more night. I wanted to be there in case Kyle had to go back to the NICU and so I could work with the lactation consultant to wean Kyle from the bottle. The extension was approved, and we crossed our fingers that Kyle and I could go home together on Friday. I was anxious about whether we would be able to spot any problems that might arise, but our pediatrician had told me to set weekly appointments for blood work and close monitoring of growth and development milestones. While the immediate dangers were receding, there still remained the possibility of longer-term health impacts of him being deprived of sufficient oxygen in the womb and in his first hours of life. The extent of damage – if any – to the brain and other organs remained in question.

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Friday afternoon we got the news that Kyle met criteria for discharge, and we spent time with the perinatologist going over home care and things to watch for. Appointments with the pediatrician were set and I got my last exam and instructions from the nursing team. A little entourage helped us get situated in the car and waved goodbye. We were greeted at the door by Lauren, my mom, bright decorations, and the soundtrack from the Little Mermaid. At long last, we were home.

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Epilogue: At Kyle’s two-week appointment with the pediatrician, his hematocrit measured 10% red blood cells, a result so low the nurse thought their equipment might be malfunctioning. We were sent straight to the hospital to repeat the test, which revealed the initial result to be correct. Another exchange transfusion was ordered and had to be administered through a scalp IV. We sat vigil in the hospital over two days of slow but steady improvement before taking him home again. Reflecting back on this traumatic series of events, we are deeply fortunate that this was the last serious health problem Kyle experienced due to HDFN.