A rare diagnosis for a rare pregnancy

When Bren Brown was pregnant for the third time, she remembers having bouts of intense morning sickness. Already having two young boys at home, ages 5 and 3, she and her husband wanted to try for just one more, hoping to get a little girl this time. But this pregnancy was already starting off a little differently. She jokingly told her husband, Rogers, that terrible morning sickness could be a sign she was having multiples. Rogers shrugged off the comment, and so did she.

The Brown family hoped to complete their family by having a baby girl. They were surprised to learn triplets were on the way. Doctors at the Center for Maternal and Fetal Care helped them bring home three healthy girls.

Because Bren’s previous pregnancies went so well and she had no complications, she had decided to use midwives to deliver her third baby. Upon arrival for her ultrasound at the 10-week mark, the midwife did an ultrasound and right away noticed two sacs.

“I couldn’t believe it. There were two in there,” remembers Bren. As the appointment continued the midwife saw a third baby. She was shocked, and so was her husband. “We were expecting just one baby, and here we were about to have three. So, it was a huge surprise,” Bren recollects.

Midwives do not deliver multiples, so Bren would need to find another option. Understanding that carrying triplets put her at high risk, she knew she needed to find a maternal-fetal medicine doctor.

When she went to her first maternal-fetal medicine appointment, she was only 12 weeks along, so the doctor asked her to return in three weeks, when she would be 15 weeks. At that appointment, she received some upsetting news. The doctor told her that the situation for her babies, particularly for the third she had already named Caemlyn, was dire. Baby Caemlyn had no amniotic fluid and didn’t appear to have a bladder.

At this appointment, she was diagnosed with stage II twin-to-twin transfusion syndrome (TTTS), which meant there was an unequal sharing of blood and fluid across the babies’ sacks. Twin-twin transfusion syndrome affects approximately 5 to 15 percent of identical twin pregnancies and is extremely rare in triplet pregnancies.

The doctor told Bren there was nothing they could do and to come back for a follow-up appointment when she was 22 weeks along. If the babies survived until then they would discuss a referral for surgery. She was told that if the TTTS progressed to stage IV it would cause either death or defects in the brain or heart for one or all of her babies.

Determined to get a second opinion and fight for all three of her babies, Bren jumped online and found the Center for Maternal and Fetal Care at The Children’s Hospital of San Antonio.

“I called and told them I needed a consult for twin-to-twin transfusion syndrome. They asked me who was referring me, and I told them I was referring myself,” she said.

Upon hearing about Bren’s situation, Dr. Emma Rodriguez, a maternal fetal care specialist with the Center for Maternal and Fetal Care, agreed to see her and referred her to a top program in Houston. Doctors there looked at her scans and said it was too early to have a surgery since she was still only 15 weeks. The inner amnion and the outer chorion do not fuse until 16 weeks, so surgery before then would cause the amniotic sac to rupture.

Dr. Emma Rodriguez, a maternal-fetal specialist at The Children’s Hospital of San Antonio, monitored Bren’s pregnancy and guided her to an expert in fetal surgery in Houston to help ensure the Brown triplets received the care they needed before they were even born.

Rodriguez and her team saw Bren three times a week, wanting to get her to the required 18 weeks the program in Houston required for surgery. But, when Bren was about 17 weeks along, she became anxious and had a feeling that if she did not have surgery soon, all three of her babies would not make it.

So, she decided to drive from San Antonio to Houston alone, leaving her husband to look after their boys so she could meet Dr. Anthony Johnson, Professor in the Department of Obstetrics, Gynecology, and Reproductive Sciences at McGovern Medical School at UTHealth and Co-Director of The Fetal Center at Children’s Memorial Hermann Hospital in Houston, to discuss her pregnancy and the possibility of a TTTS surgery. When his office did some initial tests, it was clear that baby Caemlyn’s condition had gotten worse and that she had progressed to stage III. They agreed it was time to do the surgery, and it couldn’t wait. They moved forward with the surgery that day.

“My husband and I talked to Dr. Johnson at length about the pros and cons and decided it was best to move forward,” said Bren. “Come to find out, if I had waited much longer, my other babies Avalyn and Brighlyn, wouldn’t have made it either, or there would have been lots of complications.”

Bren was right to trust her instincts. All three baby girls survived the surgery, and a few days later, Bren returned home to San Antonio.

Bren bravely trusted her instincts while pregnant with triplets. By self-referring herself to the Center for Maternal and Fetal Care and by later driving by herself to Houston to convince doctors there that one of her babies could not wait any longer to receive a life-saving surgery while still in utero.

After the surgery, Dr. Rodriguez and Dr. John Byrne would see Bren weekly and monitor her closely. Dr. Rodriguez wanted to get Bren to 32 weeks before performing a C-section. Aside from receiving an extra iron transfusion in preparation for a C-section, the rest of Bren’s pregnancy went smoothly.

On May 10, 2021, at her goal of 32 weeks, Bren had her C-section.

“Brighlyn came out first by her feet and I didn’t hear her cry but the other two cried right away,” remembers Brenlyn.  “They put the regular CPAP machine on them to see how they did and took them straight to the neonatal intensive care unit. When I was able to walk after my C-section recovery, I went down to the NICU and I was able to hold them which was amazing.”

The babies spent a little over a month in the NICU and reached all their goals including tolerating mom’s breast milk and gaining weight. Their siblings loved seeing pictures of their sisters and anxiously awaited their homecoming.   

“I don’t think they understand the magnitude of us bringing them home and what that will mean for them!” said Bren.

Baby Caemlyn, the one they were most concerned about, is the biggest of all three. All the babies were discharged on June 26 and Bren is excited to have her family together again.

“They seem to be doing well and are doing what babies do – sleeping, eating, and pooping,” said Bren.

Even though they weren’t planning for three more children, especially all at once, the Browns are excited about their new additions. They are grateful to Dr. Rodriguez and the entire team at The Children’s Hospital of San Antonio for making sure each triplet had a fighting chance to survive and join their family. It was through the dedicated monitoring of her pregnancy at the Center for Maternal and Fetal Care and the partnership with the fetal care team at Children’s Memorial Hermann and UTHealth that helped make sure these babies made it into this world safely.

“Dr. Rodriguez and Dr. Byrne took great care of me and everyone in the NICU took such good care of the girls,” said Brenlyn. “We just had a really positive experience here and I am super excited that everyone is now home and healthy.”

Double the love. Twice the Joy.

Casey Vanderstoep was excited to be a first-time mom.

On the day of her first ultrasound, she went by herself. It was in the middle of the COVID-19 pandemic, so her husband, Peter, could not go with her. The ultrasound revealed something Casey could not believe. Instead of having one baby, she would be having two.

“We were in complete shock. You never think it’s going to happen to you, but it was happening to us, we were having twins,” recalls Casey.

Casey had what she described as an amazing first 20 weeks of pregnancy. Her only real complaint was that she was tired all the time. Otherwise, she continued being active, working out and doing projects around the house. She loved being pregnant.

Things changed quickly for Casey. One day she started leaking fluid. Assuming it was normal, she didn’t think much about it but ended up talking to an on-call doctor through her obstetrician’s office to give her peace of mind.

But that night, when she was only 20 weeks and two days pregnant, her water broke. She describes it as “bursting” in the middle of the night. There was water everywhere. So, Casey and Peter quickly packed up and headed to CHRISTUS Santa Rosa Hospital – New Braunfels.

Upon arrival, Casey was leaking an unbelievable amount of fluid.  They immediately started an IV, and she was put on magnesium. If she was going to deliver the babies that night, they wanted Casey to have all the benefits of magnesium to protect the babies’ brains.

“The next day, my doctor came by. He told me that there was no evidence of any contractions and that I was not going into labor,” said Casey. “That was the good news. The bad news was that I needed to go on complete bed rest.”

Casey was admitted to the hospital and put on bedrest and magnesium from March 8 to March 23. Even though the magic number to transfer Casey to The Children’s Hospital of San Antonio was 23 weeks, they decided to do so a little earlier. She was transferred via ambulance to Children’s when she was 22 weeks and four days along. After her arrival, her doctors gave her steroid shots to help the babies’ lungs.

Casey was transferred through the highly specialized pediatric and maternal emergency transport team at Children’s. Their dedicated Maternal Transport Team has the ability to safely and quickly deliver care to pregnant women who are experiencing complications and are in need of a higher level of care, which is what Casey needed as the delivery of her babies’ was imminent.

When she got there, she was put under the care of Dr. Douglas Creedon. For a few days, things were moving along well. Casey was able to go outside in a wheelchair and had a short reprieve from the bedrest.

At about 24 and a half weeks, Casey was having painful contractions. Nurses hooked her up to monitors and started administering magnesium again. She also received a second dose of steroids for the babies’ lungs. She contracted on and off for about four to five days.

Casey was now 25 weeks and 2 days into her pregnancy. One of the babies was in distress and had a heart rate that kept dropping. Her physician, Dr. Jacqueline Battistelli, said it was game time. Instead of having a vaginal delivery, they prepared Casey for a C-section.

Dr. Jacqueline Battestelli, an obstetric hospitalist at The Children’s Hospital of San Antonio, performed a C-section to deliver the Vanderstoep twins in April.

“This wasn’t my birth plan and it wasn’t at all how I imagined it,” said Casey. “But I felt really at peace with it. Of course, I was a little scared, but I also was calm. I just knew it was time, and I kept reminding myself that it was a miracle these babies made it this far. I had faith in God that everything was going to be OK.”

For several reasons, Casey ended up getting put to sleep for the procedure, and when she woke up, her first question to her husband who was sitting by her bedside was, “Are the babies alive?” Her husband confirmed that they had both made it.

Camryn and Chandler were born on April 11 both weighing exactly one pound and 10 ounces. They were immediately whisked away to the neonatal intensive care unit.

When Casey was still pregnant, Dr. Cody Henderson, a neonatologist, had told Casey and Peter there was a high chance that Chandler would need to be intubated at birth. When Casey’s water broke five weeks prior, little amniotic fluid surrounded Chandler and for the rest of her pregnancy. To their surprise, neither of the babies needed to be intubated. It was the best news Casey and her husband had received up until this point.

At first, Casey was apprehensive about seeing them.

“I knew they weren’t going to look like regular babies,” said Casey. “I was scared and anxious.”

When she did go meet her baby girls, she would reach into their isolates and just hold their little hands. In the NICU, Casey and Peter had the good fortune of meeting a nurse, Bailey, who they formed an instant connection with.

“She was an absolute godsend to us and was the one who encouraged me to hold my babies,” said Casey. “Camryn was actually just four days old and Bailey came over and asked me if I wanted to hold her. I didn’t even think it was possible at this point. But she said, ‘no, let’s do it. We’re going to make this happen.’  So she did and I got to hold Camyrn on day four and we did skin-to-skin and she was so small.”

Casey was thrilled to hold one of her baby girls for the first time.

Soon after they were born, doctors determined the identical twins both had a patent ductus arteriosus (PDA), an opening between two major blood vessels leading from the heart, affecting the blood flow to and from their lungs and other organs. They would need a procedure to correct the PDA, called a Piccolo procedure and a procedure that Children’s had a lot of experience doing which made Casey feel more at ease.

Casey and Peter met with the cardiologist, who explained the procedure. Both Casey and Peter were scared, but they knew Camryn and Chandler needed it.

The morning they were both scheduled for the procedure, Peter received a call from the doctor. Both girls’ PDAs had gotten smaller overnight, and neither of them would need the surgery after all.  It was another miracle.

Soon after the twins were born, they were diagnosed with a patent ductus arteriosis (PDA) that would require each girl to have a heart procedure. On the day it was scheduled, doctors found that the heart defect had grown smaller and an intervention was no longer needed.

Today the babies are still at The Children’s Hospital of San Antonio and both doing well. They are expected to go home this summer. Doctors have performed scans on the twins’ brains and have done eye exams. Neither baby has shown any signs of problems which is miraculous for babies born at 25 weeks.

Casey credits the team at Children’s for saving her babies’ lives.

“They are the reason my children are here. The care they give them every single day is unbelievable. I thank them from the bottom of my heart,” said Casey. “The hospital is home to us now. We know the people at the front desk and lots of the staff. These are probably the nicest people I’ve ever met.”

Until the babies are released to go home, Casey and Peter live at the Ronald McDonald House inside the hospital, which has proved itself to be a safe haven, allowing the Vandersteops to see Camryn and Chandler every day. Casey had volunteered at the Ronald McDonald House when she was in a sorority in college so things had come full circle now and she appreciated that there was a place she could stay and remain close to the babies.

The twin girls continue to grow stronger each day they are in the NICU.

“I can’t thank my husband, my entire family, friends and my coworkers enough. They were such a solid support system through all of this and have been doing everything they can do get me through this incredible journey,” said Casey.  “In particular, I want to thank Dr. Battistelli, Dr. Creedon, Dr. Perikh, Dr. DeVries, Dr. Motta, Dr. Pierce, Dr. Mohan, and nurses Bailey, Rachel, and Kristen. This has been the hardest journey but so worth it. We have our girls, and it’s because of this wonderful team of caregivers.”

Mom and Baby Fight Against Overwhelming Odds

Vanessa Jaramillo did not realize her own strength until she had to fight for not only her survival but for her baby boy JayDen’s as well.

In December 2019, when Vanessa was 21 weeks pregnant, she began leaking fluid and wasn’t exactly sure what it was. She immediately began to worry and wonder if she was having a miscarriage again.

“I knew I wasn’t supposed to look it up on Google, but I did anyway and figured out it might be amniotic fluid,” said Vanessa.

And that’s exactly what it was.

Vanessa would soon find herself not only fighting to save her unborn son, but to also save her own life.

Born a fighter 

Vanessa knew it was too early for JayDen to come. She immediately went to the hospital that was near her, but because it was not equipped to handle babies born at 22 weeks gestation, she was immediately transferred to The Children’s Hospital of San Antonio, which has a level IV neonatal intensive care unit (NICU) and specializes in caring for micro-preemies.

On December 21, 2019, Dr. Kimberly Crittenden, an OB-GYN who delivers at The Children’s Hospital of San Antonio, performed a C-section, and JayDen was born, weighing only one pound and six ounces. Nurses immediately whisked him away to the NICU. Vanessa could not hold him right away and only saw him through video.

“I remember his eyes were shut, and his skin was so transparent. He was really, really little,” said Vanessa. 

A few days after he was born, JayDen had a perforation of his bowel – a condition where contents of the intestines spill into the abdomen, causing a host of infections. He needed to have surgery right away, or he could die. So, to save his life, they would have to cut out part of his intestines and connect his remaining small intestine to his skin through a stoma, allowing the intestines to heal.

“We were so scared, but we knew JayDen needed to have the surgery to be able to have any chance of surviving,” said Vanessa. “So we signed the paperwork, and the doctors did the operation.”

Just a few days after he was born, JayDen underwent surgery on his intestines.

JayDen made it through the emergency surgery. He remained on a breathing machine and a chest tube for an air pocket around his lungs that had occurred shortly before surgery. After a while, he seemed to slowly improve. But Vanessa admits it was really hard to see him in such a fragile condition at times.

During one of these moments, she encountered a NICU nurse, who provided some reassuring words.

“The nurse told me that she had seen other 22 weekers survive and that God has the final say,” said Vanessa. “She reminded me not to let anyone or anything take away my hope and that I would be the one JayDen would depend on to help keep up his fight. That is all I needed to help me keep fighting for him.”

Vanessa said the NICU nurses offered her hope that JayDen would survive despite the many challenges he faced as a micro-preemie.

Mom’s a fighter, too

Knowing that JayDen would be in excellent hands with the NICU team at The Children’s Hospital, Vanessa left the hospital to go home to be with her other four children. A couple of days later, Vanessa began spotting. She decided she’d better go back to the hospital to get checked out. After JayDen was born, she had developed a blood infection and she wondered if the two were related.

Upon arrival at The Children’s Hospital of San Antonio, the doctors did some tests and it was determined that Vanessa had developed an abscess in her uterus and was quickly transferred to a nearby community hospital.

“The doctors couldn’t guarantee the state of my health for the next 24 hours. I thought I was literally going to die,” said Vanessa.

The following day on December 31, 2019, Vanessa underwent a six-and-a-half-hour long surgery. Doctors had to re-open her C-section, do an entire washout of her abdomen, and perform a full hysterectomy due to the severity of the infection.

Vanessa was in the hospital for several days and after leaving the hospital, she was still in pain, and had to go back. During that stay, doctors drained 60 mL of fluid from her one remaining ovary.

Vanessa was able to go home, but required the help of home health nurses for several weeks to assist with her wound vac and to change her dressings. It was a painful recovery. By April 2019, Vanessa was finally feeling better and was able to focus her attention back on JayDen.

“During all of this time, my husband was my rock. He had me at one hospital, our son at another and our other kids at home. I know it was hard on him, but he didn’t let me see it – he was trying to be so strong for me,” said Vanessa.

All of this time, as Vanessa was fighting for her life, JayDen was still fighting for his.

A setback

In March, JayDen was big enough to have surgery to reconnect his intestines. It was during this second operation that he needed a breathing tube. Doctors explained that the tube, while necessary to help him breathe, may have caused JayDen to develop pneumonia, blood and skin infections, and other complications.

JayDen developed an air pocket within his lungs, a condition called pneumatocele. The air pocket became so large that it pushed his heart to one side and prevented his lungs from inflating well. They put him on a jet ventilator, designed to deliver high pressure to his lungs used for the sickest babies in the NICU.

While all of this was happening, doctors were concerned that JayDen would develop bleeding in his brain and that he was at risk for developing cerebral palsy. Jayden’s little body grew swollen from all the fluid he was retaining and his liver started to fail.

JayDen and his family experienced many ups and downs during his time in the NICU. Vanessa said she could not give up on him and wanted the doctors to do all they could to help him.

Dr. Lindsay DeVries, one of JayDen’s primary neonatologists, remembers the ups and downs of JayDen’s journey. She would have multiple conversations each day with the pediatric surgeons, pulmonologists, nurses and the family to try everything they could think of to help him improve.

“JayDen was so sick and he was constantly on my mind. I wanted to do everything we possibly could to help him, but the odds were against us,” explains Dr. DeVries.

Dr. Lyndsay DeVries was one of JayDen’s primary neonatologists during his eleven-month stay in the NICU. She coordinated his care with many other specialists available at The Children’s Hospital of San Antonio.

Not out of the woods

But at no moment did Vanessa give up on her tiny fighter.  

“He hadn’t given up, so I wasn’t going to give up on him. We had been through too much,” said Vanessa. “I knew I had to be JayDen’s advocate and speak up for him and I would encourage other parents to do that as well for their babies.”

After trying all other possible treatments, the team at Children’s told Vanessa and her husband that JayDen would need to have part of his lung removed. The lobectomy would take out the non-functioning lobe to allow the remaining lung tissue to expand and work better. It would be a risky surgery, but without it, JayDen might not survive.

“Once I started thinking about it, I couldn’t eat. I couldn’t sleep. It was really affecting me,” said Vanessa. “I talked to my husband, and we decided we needed to give our baby boy every fighting chance he could get.”

Dr. Barry Cofer, who had performed JayDen’s intestinal surgery, was set to do the lobectomy and was pretty optimistic about JayDen’s chances. JayDen came back from the surgery on a regular ventilator, and his remaining lungs slowly improved over the following weeks.

“The surgery was the best decision we ever made,” said Vanessa. “JayDen had been on every kind of medication beforehand, and they were able to start weaning him off. His carbon dioxide levels began to stabilize a little bit more, and he was no longer on a jet ventilator but a conventional one, which meant he was moving in the right direction.

JayDen spent almost the entire first year of his life in the NICU at The Children’s Hospital of San Antonio before finally being discharged on November 18, 2020.

When JayDen had the lobectomy, he was 8 months old. At 11 months old, on November 18, 2020, JayDen was finally discharged from the hospital after multiple surgeries and many ups and downs.

“Getting JayDen home was a true team effort,” explains Dr. DeVries. “As a medical team, there were several times during his hospitalization where we felt there was nothing else left we could do, but JayDen’s mom wasn’t ready to give up. I was impressed by her determination. She pushed me to explore all possible treatments – to try just one more thing.”

Even though JayDen would eventually come home with oxygen through a nasal cannula and a g-tube to help deliver food and nutrition, Vanessa was just so happy to have him home with the rest of the family.

JayDen’s big sisters were so excited for him to be home to celebrate special holidays like Easter.

A light in the dark 

Throughout JayDen’s journey in the NICU, Vanessa encountered several doctors and nurses who served as a calming force, including Dr. DeVries.

“I think our story would have been so different if it wasn’t for her,” said Vanessa. “It’s evident that she loves her job. She did an amazing job advocating for my son and never stopped. She would call me on her days off just to check on him and really fought for JayDen.”

Dr. DeVries added, “JayDen is truly a miracle baby, he will always be our ‘Jam Jam.’ As a 22-week micro-preemie, he had a number of complications and overcame insurmountable odds. He surprised all of us and continued to fight through things that medicine said he couldn’t.  Because of that, he is still here with us today. Our NICU team at The Children’s Hospital of San Antonio is so blessed that we can be part of his story.”

In addition to Dr. DeVries, Vanessa was grateful to the team of nurses who took care of JayDen while she struggled with her own health issues and recovery.

Looking back on their experience, Vanessa recalls one of the most cherished moments when JayDen moved to what is referred to as the “Goldfish pod” of the NICU, a stepdown area used for preparing babies for going home.

“I had a ton of emotions when they were able to move him to the Goldfish pod, and he had a room all to himself. I was so happy and excited, but also scared that we were leaving this safe haven, the Sunshine pod, the place that protected JayDen during almost the entire first year of his life.”

She didn’t want to leave nurses like Heather and Melody, who took care of JayDen during the night shift.

The bonds she formed with the nurses are still strong almost a year later. Vanessa sends them photos of JayDen and his significant milestones, like getting his first “big boy” haircut.

Today, JayDen is doing well aside from having chronic lung disease. He is off oxygen and eating by mouth as well as through his g-tube. Dr. Tarak Patel, his pulmonologist, is amazed by his progress. Currently, JayDen does physical and occupational therapy and eventually will do speech therapy.

“I don’t know what I would have done without the team at The Children’s Hospital of San Antonio” said Vanessa. “Everyone had such compassion for JayDen and such love for him. It was truly extraordinary.”