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Mothers tell their stories about the Special Delivery Unit

Since the Garbose Family Special Delivery Unit opened in June 2008, more than 1,800 moms have delivered their babies in this one-of-kind unit created exclusively for babies with birth defects at The Children’s Hospital of Philadelphia.

Delivering a baby with a known birth defect can be a challenging time for families. It’s made easier by having immediate access to your new baby and room to share your joys and concerns with loved ones.

Here, some families share their thoughts about the Special Delivery Unit.

Ryan: Congenital diaphragmatic hernia

Photo of Ryan and his Brothers
Apple of Their Eye
Born with CDH, Ryan Marye is now happy and healthy back home in Virginia with her parents and four older brothers.

"When we first found out our daughter's diagnosis we weren’t aware of the severity of her birth defect. The thought never crossed our mind that we would need to deliver her more than 400 miles away from home.

As we researched congenital diaphragmatic hernia (CDH), we realized quickly that this rare defect requires special care and special doctors. Through extensive Internet searches and advice from local medical specialists, we decided to go for a consultation at the Center for Fetal Diagnosis and Treatment at the Children’s Hospital of Philadelphia. 

We still were not 100 percent sure where we wanted to give birth to our first daughter. Once we met with the nurses, Mark P. Johnson, MD, and Holly L. Hedrick, MD, we knew this was where we needed to be to have our daughter.

The day I went in to the Special Delivery Unit (SDU) I didn’t expect anything more than what I had experienced during my previous three childbirths. I knew things would move fast for the baby and stabilizing her in the delivery unit, but didn’t even consider the amount of support my husband and I would need after her birth. From the moment I stepped into the SDU I was treated with the most excellent care I have ever received in a labor and delivery unit. This is pretty impressive coming from a mother of five!

Our daughter was quickly taken down to the N/IICU and her status went from stable to critical within the first 36 hours of her life. The nurses in the SDU genuinely cared about her condition as well as making sure we were taken care of.

I remember the night our little girl had to put on ECMO. This was a horrifying experience that no parent ever wants to see their baby go through. Between the nurses in the SDU keeping our mind off what was happening and the N/IICU team assuring us she would be alright, I do not know how the three of us would have had the strength to push through.

All of the CHOP nurses were true blessings sent to our family from up above. We cannot thank them and CHOP's brilliant doctors enough for saving our little girl's life.

Ryan Marye is now four months old. She spent the first 70 days of her life at CHOP and is now home with her four older bothers: Dylan, Owen, Graham and Grayson (as shown adoring her in the picture above). Our family is forever grateful that the Lord put all these wonderful people at CHOP in our lives!" 

— Ronni and Chris, Fredericksburg, VA

Vincenzo: Gastroschisis

Vincnezo
One of the First
Vincenzo was one of the first babies born in the Special Delivery Unit at CHOP. Today, Vincenzo — pictured with his mom and dad — is a happy, healthy 3-year-old.

"My son Vincenzo was born in the SDU on June, 24, 2008. He was the seventh birth there. He was born with gastroschisis and spent two months in the N/IICU at CHOP. We were the gastroschisis family featured in the 'Inside Out' abdominal wall defects video that CHOP produced that same year. 

We had a wonderful experience at CHOP — from the Center for Fetal Diagnosis and Treatment, to our time in the SDU, to the two months we spent in the N/IICU — everyone there was so wonderful to us, and continues to be.

Living 1½ hours from the Hospital, CHOP wasn't the obvious first choice for us to deliver at since it was such a distance. However, the fact that the SDU was opening up just before I was due, and the fact that CHOP is the best children's hospital in the country, made our decision for us.

We wanted the best care for our son so he could have the best outcome. It didn't matter if we had to travel for hours each month, and eventually every week; it was the BEST place for our son, so the sacrifice was worth it.

It was actually during one of my prenatal appointments at CHOP when they spotted a problem with Vincenzo's heart rate. Because of the close monitoring here, we were immediately brought into the delivery unit and I had Vincenzo that day by c-section. If it was not for the SDU and the Center's team, we might not have Vincenzo.

Today, my son is 3 years old and thriving. He attends preschool, he loves hip-hop dance, hockey, football and basketball, as well as other sports and activities.

We owe everything to CHOP. Thank you!"

— Kate, West Orange, NJ

Zachary, Cadence & Parker: CCAM / multiple births

Kids at Window
More Love
Triplets Zachary, Cadence and Parker are joined by little brother Riley as they look out the window. The triplets were born in the Special Delivery Unit because doctors discovered Zachary had CCAM and needed immediate specialized care after birth.

“We are the proud parents of Zachary, Cadence and Parker, triplets born in the Special Delivery Unit on March 6, 2009. At 20 weeks gestation, Zachary was diagnosed with left congenital cystic adenomatoid malformation (CCAM), a fetal lung lesion that can have serious health implications for the baby and mom.

Thanks to CHOP and the SDU team, we knew we did not need to end the pregnancy and that there were treatment options that would lead to healthy and beautiful children. Today, the triplets are 26 months old and have a little brother who is 13 months old.”

— Karen and Jason, Yardley, PA

Caleb: Hypoplastic left heart syndrome

Caleb
Heart Song
Andrea and Joe with their son Caleb, who was born in the Special Delivery Unit.

“I delivered my son Caleb in the SDU on July 23, 2010. He has hypoplastic left heart syndrome, a rare congenital heart defect, and has had two heart operations, the Norwood and Glenn, at CHOP.

The SDU was amazing! They truly made the best out of a situation that had an unknown outcome. They gave us hope and kept us positive. The doctors, midwives and nurses are absolutely top notch and I brag about them every chance I get. Thank you so much for all you do!”

— Andrea

Jarrett: Myelomeningocele / spina bifida 

Jarrett
Our Miracle
Diagnosed with myelomeningocele in utero, Jarrett was delivered at CHOP's Special Delivery Unit where he received immediate postoperative care.

“My son Jarrett was born in the SDU on April 20, 2009. Victor A. Zachian, MD, and his team delivered Jarrett at 11:35 p.m. Jarrett was diagnosed with myelomeningocele, the most severe form of spina bifida, at 20 weeks gestation. He was operated on after birth to repair the area around his spinal cord. Today, Jarrett is 2 years old and getting ready to walk! He actively stands on his own, crawls and can walk side to side with assistance.

Without the SDU and the incredible doctors and nurses, our miracle would not have been possible. The nurses were great and took excellent care of me and always wanted updates from me about Jarrett while he was in the N/IICU.

Whenever we are at CHOP for an appointment, we visit the SDU first! I felt so at home there and feel blessed to call everyone there a friend.”

— Kerri, Mercerville, NJ

Landon & Luke: Twin-twin transfusion syndrome

Landon and Luke
Twin Joy
Landon and Luke at 11 weeks old. The boys were successfully treated for twin-twin transfusion syndrome at CHOP.

“Our twins, Landon and Luke, were diagnosed with twin-twin transfusion syndrome and treated with laser therapy before they were born.

So I was actually a patient in the Special Delivery Unit twice – while I was pregnant and when the boys were born in February 2011.

Our twins are doing wonderfully. Thank you!”

— Sandra, West Grove, PA

Ava Elizabeth: Truncus arteriosus

Ava
At the Bedside
Melanie was able to be at her daughter Ava's bedside in the Cardiac Intensive Care Unit after delivering her in CHOP's Garbose Family Special Delivery Unit. 

"I delivered Ava Elisabeth in the SDU on Dec. 15, 2009. She was born with truncus arteriosus and had surgery on her second day of life.

The nurses in the SDU were amazing . . they made me and my husband very comfortable. The nurses in the CICU were also amazing, we always felt comfortable when we had to leave her and go home to our other two children.

I still wear my beautiful, comfortable robe from the SDU every day. Thank you so much!"

— Melanie, Matawan, NJ   

Michael: Abdominal wall defect

Michael
Cruising
Michael was born with gastroschisis and treated for the abdominal wall defect at CHOP.

“Michael was born in the CHOP Special Delivery Unit on June 3, 2010.

Born with gastroschisis, he spent three months in the N/IICU before he could come home.

Everyone at CHOP was wonderful. Thank you so much for giving me my miracle.”

— Michelle, Roselle Park, NJ

Daniella: Congenital cystic adenomatoid malformation

Photo of Daniella
Bundle of Joy
Diagnosed with CCAM before birth, Daniella's mom and dad traveled to CHOP from Long Island, NY, to ensure their daughter would be born at facility that could provide the best care possible.

"My daughter Daniella was born in the SDU on July 7, 2010, via c- section. She was treated for a large CCAM (congenital cystic adenomatoid malformation).

Everyone from the nurses to the doctors in the SDU were amazing! They all had wonderful bedside manners, and the nurses did an amazing job comforting me when I was feeling down. They helped keep my mind off of what was going on with my daughter — a least for a little while.

If I had to do it all over again, I wouldn't change a thing. I would still have traveled from Long Island, NY, to CHOP for both my daughter and I to be treated. 

My daughter was in the N/IICU for three weeks and I couldn't have been more comfortable with her being there because I knew she was in great hands. Thank you CHOP for saving my daughter's life! I don't know where I would be without such an amazing hospital."

— Karina, Long Island, NY 

Lily: Transposition of the great arteries

Lily
Sweetest Flower
Lily was born with a rare heart defect. Because her mom gave birth in the Special Delivery Unit at CHOP, Lily had access to the best care before, during and after birth.

“Lily was born in the SDU on Jan. 4, 2010. She was born with a rare and life-threatening congenital heart defect, transposition of the great arteries. She had open-heart surgery one week later and is now doing beautifully — enjoying life to its fullest.

We loved the SDU; the doctors, nurses and the entire staff were excellent. We feel very lucky to have had access to such amazing care for myself and our daughter.”

— Laura, Philadelphia, PA 

Penelope: Abdominal cyst

Penelope
Looking at You
Diagnosed in utero with an abdominal cyst, Penelope was born in the Special Delivery Unit in February 2011.

“I delivered my daughter, Penelope, in the SDU on Feb 8, 2011. She was diagnosed in utero with a large abdominal cyst. 

She's 4 months old now, and doing great! She smiles and laughs all the time, particularly at her older sister Emily.

We are so grateful for the wonderful care we received at CHOP, both in the SDU and N/IICU.”

— Jay, Springfield, PA

Kellen: Hypoplastic left heart syndrome

Kellen
Little Warrior
After being born with a heart condition and treated at CHOP, Kellen is thriving.

“I delivered Kellen on Dec. 21, 2010, in the Special Delivery Unit and spent Christmas there.

He was born with HLHS (hypoplastic left heart syndrome) and treated at CHOP.

I love the SDU! The nurses and doctors are awesome. We love being a CHOP family.”

— Stacie, Pottstown, PA

 

March 2012

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