A Slightly Twisted Fairytale

 

 

Kendal 4 days old (2003)-Open Heart Surgery (CHD,Coarctation of the Aorta, PDA, 5 VSD’s and a bicuspid Aortic valve). Diagnosed with VACTRAL syndrome. Kendal and Neurosurgeon Dr. Michael Scott (2015), neurosurgery for theathered Spinal Cord. Kendal and Neurosurgeon Dr. Vestal.

Photo:Kendal and Mom… both avid runners. Katheryn and Mom (2016) after her Thoracotomy to remover a 9cm Gainglioneuroblastoma mass for her chest and spine. Katheryn and her surgical team from Boston Childrens Hospital Boston and Dana Farber Cancer Institute.

Kendal’s Birth 10/10/03                                         
Written 2004 By Tara Campbell

We found out the news at thirty weeks.  I sat there on the ultrasound table at Brigham and Women’s hospital in Boston.  “I am sorry Mrs. Powe, but your baby has one kidney and a hole in her heart,” the radiologist said.  I wanted to curl up in a ball and die.  “How can this be happening to us again,” I said to my husband as tears poured down my face.  This was our third child.  Our seven-year-old son had sustained a brain-related birth injury from the vacuum extractor; he now suffers from cerebral palsy and epilepsy.  Our two-year-old daughter was born via emergency section.  I was desperate to achieve one natural, peaceful birth experience I had been planning a VBAC for the past 30 weeks.  I was ready!  You see I am a birth doula; I help women achieve a gentle and calm birth experience.  Very rarely have I ended up in the OR with a client.  I knew what this news meant for me; the OR was imminent.  A repeat caesarean section was required.

We were sent to Children’s Hospital Boston for a fetal echocardiogram.  Dr. Gerald Marx would be her cardiologist.  He explained to us that he had found more problems.  He told us she had a possible coarctation of the aorta, and there are two VSDs in her heart.  He could not tell us anything more until she was examined at birth.  He did not suspect surgery would be needed immediately after birth.  He told us there might be an underlining genetic disorder, like Downs or Turners syndrome.  I opted not to do the amniocentesis at 30 weeks . It did not matter to me; I would love my child no matter what.  Kendal Grace Powe was born via cesarean section on October 10, 2003, at 11:45 am.  She weighed 4lbs 10oz and was 16 ½ inches long.  Her APGAR scores were 9 and 9.  She came out screaming.  She was beautiful and so tiny.  The OR was packed.  The cardiac team from Children’s Hospital was there; my mom and husband were with me.  Father Winchester was with us; he prayed with us during the birth and he baptized Kendal in the OR.  My dear friend Deb was with me.  You see, not only was I a patient at Brigham and Women’s Hospital; I was an employee in Labor and Delivery.  I knew everyone around me, the support was tremendous and I cannot thank my boss Beth and all my friends and co-workers enough.  They took Kendal right away to the ICU, my husband left me in the OR to go with her.  I started crying, and I could not stop.

I saw Kendal that afternoon; she had been transferred to the Cardiac ICU.  Dr. Marx came in and told us her heart condition was worse than what he initially thought.  She actually had 5 VSDs, a severe coarctation, a large PDA that would not close, a bicuspid aortic valve, mitral valve prolapse, and a horseshoe kidney that was functioning.  I thought I was going to be sick.  My poor mother literally fainted and I could see the devastation on my husband’s face.  “Open heart surgery will be done Tuesday, October 14th at 1:00 p.m.,” they told us.  Her condition continued to decline from there, suffering from congestive heart failure.  I could not leave her.  Thank God, there was an indoor tunnel connecting the two hospitals.  My husband wheeled me over constantly; I only returned to the postpartum floor for my meals and pain medication.  I knew I was suffering physically and pushing myself beyond my limits, I was not allowing myself to recover.  There was a good chance Kendal would not survive, and I needed to be with her.  Even though I could not hold her, I could look at her.  I remember staring at her thinking “if she doesn’t make it, will I remember what she looks like in real life.”  I desperately wanted to nurse her but they would not allow her any food before surgery.  I was determined to keep pumping to keep up the supply for her.  The doctors told us she may need to be placed on a ventilator.  I wanted my kids and family to meet her before this, so they came to visit the next day.  After the visit, I remember my husband asking me if I wanted some time alone with Kendal while he walked everyone out.  I said yes and the nurse allowed me to kangaroo her.  I smelled my daughter as I sang to her and rocked her.  The nurse then stepped away for a brief moment and I can still remember the sounds.  It was awful, she let out a gasp, and the alarms went off.  She was having an apnea spell.  Her heart was failing and there was nothing I could do.  They grabbed her from me.  I was in complete panic.

We met Dr. Frank Pigula that afternoon; he would be Kendal’s cardiac surgeon.  He was very honest with us, explaining all the risks of the surgery.  He said it would be a six-hour operation. That the biggest mortality risk to her was her weight and coming off the bypass machine.  He treated Kendal with the respect she deserved.  He told us he would do his very best.  I begged him to bring her back to me.  He is one of the most compassionate doctors I have ever met.  She was never put on the ventilator before surgery; she fought it all the way.  My strong little girl, she shocked the entire team.  An hour before surgery I lost it, I felt trapped.  I felt cornered like there was no way out.  I think Father Nee saw me breaking down.  He pulled me into a room alone.  I begged him to answer me “where will she go if she dies?”  I kept telling him “I don’t understand any of this!”  “I cannot do this,” I screamed.  I felt insane almost, at that moment I thought my mind would be lost and I would never function again.  He looked at me and said “Tara, none of this is in your control.  God will guide her to where she needs to be, either way, she will be in the right place.”  He told me I could love her even if she is not in my arms, I can love her during her surgery by imagining my love being like a blanket wrapping her up tight.  He told me she could feel my love even though it is not physical.

I kissed her goodbye; I told her I could not live without her and to please come back to me.  They took her at 3:00pm to surgery. I will never forget the compassion the surgical team gave us; they were wonderful.  I handed her to the nurse.  I cried.  We all cried.  My husband collapsed at the elevator.  She was awake when she left us, her big brown eyes peeping over the blanket.  She looked scared.  The doors closed, I did not know if I would see her alive again.  I knew Dr. Pigula was the only man that could save her at that point.  God was with his surgical team that afternoon and guided them all through a successful surgery.  I only pray he can do for other children as he has done for our daughter.

Kendal’s surgery was a success; they repaired three of the 5 holes.  They surgically closed her PDA and they fixed her aorta.  She recovered well.  Getting her to the breast was a challenge with the feeding tube in place, but we did it.  How can we ever give you the credit you truly deserve Dr. Pigula?  You saved our daughter’s life!  She suffered from congestive heart failure for four days before you gave her a new life.  God bless you and your team. You are forever in our thoughts and prayers.

Kendal is home now growing beautifully. We are blessed to have her in our life.  All her genetic testing came back normal.  We are thankful. As a mother of two special needs children now, I truly believe God will only give you what you can handle.  Do not ask why, because you will never get the answer.  As a doula, I have learned that no matter how your birth experience turns out, it is still the birth of your baby.  It is special in every aspect; embrace the moment no matter what the situation.

Thank you to everyone at both hospitals, for the wonderful care and guiding us through a journey no parent should have to experience.  You gave us strength and helped us to see Kendal, even as she laid there with all those tubes.  Thank you for all the prayers from family and friends.  Thank you, Gram, for coming to see her.  Thank you Evian and Shelby for understanding where mom and dad were, we enjoyed your visits at the hospital.

2012 – Update: Kendal continues to grow strong; she is an active girl, quite comical and loves to make us laugh.  So much has changed; she enjoys spending time with her family and friends.  She loves skateboarding, skiing, and softball and is a very active kid.  Kendal is a NY Yankees fan.  It is still very hard for me to read what I had written above; it feels like so long ago.  We spend so much time at Children’s Hospital in Boston that we try to give back by being involved in a variety of events with Children’s Trust.  Evian suffered extensive brain damage; he suffers from cerebral palsy, epilepsy, immune issues, and other neurological conditions.  Shelby is a patient in ophthalmology, and all the kids are seen in dentistry.  The care we have received is outstanding.  I cannot thank them enough.  I want to thank Wendy who has been Kendal’s patient partner for the past five years.  Wendy continues to run the Boston Marathon for Children’s Hospital Boston Miles for Miracles.  Kendal really looks up to her.

2015- Update: We have had a disappointing year.  During a 5K run last summer, Kendal had a cardiac episode that landed her in the Cardiac ICU at Children’s Hospital.  Over the past two years, Kendal had started experiencing some significant neurological symptoms.  In the spring of 2015, Kendal was diagnosed with VACTERL association, which included a tethered spinal cord that had gone undiagnosed for 11 years.  She had neurosurgery under the care of the renowned neurosurgeon Dr. Michael Scott.  Kendal continues to get better each day but she will be impacted for the rest of her life by this new diagnosis.

UPDATE:  Sometimes it feels like it will never end.  Four weeks after neurosurgery Kendal spent a week at Boston Children’s with meningitis and Lyme disease.  I can not thank the doctors enough for such amazing treatment.

 

Oct 2016 Update: Expect the unexpected. Please read my youngest daughter Katheryn’s journey through a cancer diagnosis and what it has taught me as a mom, doula, and advocate.

https://www.facebook.com/littlemisskatheryn/

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