Birth And Diagnosis
Caitlin was born on September 17, 2002, at 34 weeks gestation. I was induced because I was dialated to over 3 cm and her heart rate dropped into the 60's. Not only was she born 6 weeks early, but she had what is called In Uterine Growth Retardation (IUGR) and was only 2# 13oz at birth.
When Caitlin was 2 days old on Sept 19, 2002, I left the hospital, with her in the Neo Natal Intensive Care Unit (NICU). Then, my husband and I got a phone call. It was a NICU nurse, "The doctor needs to talk to you." My heart stopped. I knew something was wrong.
When we got to the hospital, the doctor was waiting for us. He took us into his office and broke the news to us. Hypoplastic Left Heart Syndrome (HLHS). That plus her low birth weight only gave her a 30% chance of survival past 6 weeks of age.
That night they decided to intubate her so she didn't have to work as hard to breathe, and start a medication called PGE to keep her PDA open.
The form of HLHS Caitlin had is when a child is born with an underdeveloped or sometimes even missing left ventrical of the heart (which pumps oxygenated blood to the body), and a small aortic arch. In Caitlin's case, the chamber was very underdeveloped. (more info can be found at www.childrenscardiac.com)
Treatment
We were given our options. The first was out of the question. Compassionate Care. But, my husband and I were not going to just sit back and let her die without fighting.
The second option was transplantation. With Caitlin's birth weight and blood type (AB+) it was very unlikely she would get a donor in time.
The third, and in our minds only, option was to allow her to grow, then go down to Portland, OR for surgery. We let her grow in the hospital for a month when surgeon Dr. Albert Starr called to say he felt we could not waite any longer. We left for Portland on October 18, the day after Caitlin turned one month old.
When we arrived in Portland, the chances we were given were grim. Dr Starr, the optimist, gave her a 50/50 chance. But the more realistic Dr Marc LeGras (her cardiologist in Portland) gave us the cold hard facts, 30% chance of surviving the surgery. She would be the smallest baby in the U.S. that the surgery was attempted on.
The surgery took place at Legacy Emanual Childrens Hospital on Monday, October 21, 2002. We settled in for a 12 hour surgery, called Norwood Stage 1. It would have been the first of at least three surgeries.
Well, after about 10 hours, Dr Starr came into the room. "It was surgical perfection. The rest is up to her. You can see her in a few minutes." My husband, Joey, and I cried together, she made it through! We went into the room in the Pediatric Intensive Care Unit (PICU). Even though we were shown pictures of what she would look like after the surgery, I was shocked. There was my daughter, her chest still open (they keep it open, but covered, since the heart swells after such a difficult surgery), tubes and wires everywhere. In the next 48 hours, she swelled up to almost 3 times her own weight (now about 3 1/2 pounds). After almost a week, Dr Starr attempted to close her chest.
She went into cardiac arrest! She was out for 27 minutes. We thought that was the end! But, she pulled through! Five days later, it was close the chest now, or risk infection. They got it closed!It was Friday, November 1.
It was not until November 6 that her eyes would open again when the paralytic and sedative wore off. On Tuesday, November 12, 2002, I was able to finally hold Caitlin for the first time since her surgery! What a magical moment! I held her for two hours, I think I knew in my heart something was going to happen soon.
Then, on Wednesday, November 13, 2002, Joey and I got a phone call. Caitlin was putting out irregular heart patterns. We went over to the PICU to find them giving her CPR. They tried to revive her for over an hour, but it was to no avail. Our little Angel slipped away from us at 8:04AM.
About Hypoplastic Left Heart Syndrome
Here are some of the terms you might hear while on the roller coaster of HLHS.....
IUGR- In Utero Growth Retardation- The child did not receive enough nutrients during gestation due to placenta failure, or child failed to grow during gestation, causes low birth weight.
NICU- Neo Natal Intevsive Care Unit or Newborn Intensive Care Unit. Intensive care specifically for newborns.
PICU- Pediatric Intensive Care Unit. Intensive care specifically for children and infants.
Intubate- Placing a tube down the windpipe to allow the ventalator to assist with breathing.
Ventalator and Resperator- The machines used to assist with breathing. They can either breathe for the child or help the child while breathing on their own.
CPAP- Attached to a resperator. Blows constant O2 into child's lungs so they do not deflate. May cause a temporary "pug nose".
PDA- The hole all newborns have in their heart. This usually closes within a few weeks after birth. If an HLHS child's PDA closes, death is imminent.
Compassionate Care- Allowing a terminally ill person to go home to die amungst family and friends, sometimes called a Humane Death or Hospice.
Norwood Stage 1- The first step in the three step surgical treatment of HLHS. The PDA is tied off, the Aorta is widened, and a gortex shunt is "installed" to pump blood into the lungs.
O2 Saturations- The level of oxygen in the blood.
Medications
This is a list of some of the medications used and a short summary of what they do.
PGE1- Keeps the PDA open until surgery.
Dopamine- To maintain blood pressure.
Milrinone- To help maintain urination. Used to manage swelling after surgery.
Heparine- Blood thinner.
Asprin- Pain management and mild blood thinner.
Vecaronium (Vec)- To paralyze the child while the chest is still open.
Versaid- A sedative.
Fentanyl- A narcodic used for pain management.
Tylonal- both oral and sepository. For pain management.
IV Fluids and Lipids- since the child can not eat while paralyzed, to maintain the child's nutritional needs.
Lasix- To assist with urination. Used to manage swelling after surgery.
In Memorial
"Daddy's hands were soft and kind when I was cryin, Daddy's hands were hard as steel when I'd done wrong. Daddy's hands weren't always gentle, but I've come to understand, there's always love in Daddy's Hands"
-Daddy's Hands, Holly Dunn
Caitlin Elizabeth
September 17, 2002 to November 13, 2002
Mamma and Daddy will always love and miss you Katie Bear!!
You were an angel amongst us, Little One, and we are glad God let us borrow you from His home for the short time you were here. You touched our hearts in many ways, and we hope we served you well while you were here.
1,000 Words can't bring you back,
We know because we tried,
Neither could 1,000 tears,
We know because we cried,
You left behind a broken heart,
And happy memories, too,
But,
We never wanted memories,
We only wanted you. (Author UnKnown)
Thanks so much to all who helped Caitlin: family and friends who offered prayers, nurses who offered support and care, Dr. Starr and Dr. LeGras who offered their genius, Dr. Norwood who developed a treatment for Hypo Plastic Left Heart Syndrome, all who offer support and donations to Ronald McDonald House Charities who offered us a place to stay, all those in the Air Force Intelligence Community for their support, and God, who allowed us to borrow His most precious Angel, if even only for a few months.
You are not hurting any more, you are not suffereing, You are home now, Little One, where you will never have to suffer again and you will always be happy.
Your spirit will come back to us soon, Lady Katie, and whenever you want to return, Mamma and Daddy will be waiting with open arms.
If you have any questions about HLHS, Legacy Emanual Children's Hospital, Dr. Starr. Dr. LeGras, The Ronald McDonald House of Portland and SW Washington, The Norwood Stage 1 Procedure, what it is like to loose a child, or anything else, please feel free to email me. If you are an HLHS parent and need support from someone who has been there, also please feel free to contact me
Helpful Sites
Dr Albert Starr, Surgeon
Dr Marc LeGras, Cardiologist
Ronald McDonald House Charities of Portland and SW Washington
Providence Medical Systems- Children's Hospital
