Lauren Elizabeth Duggan                April 4, 2003 to April 27, 2006 

My name is Georgiann Duggan and this is the story of my precious little angel Lauren who was born on April 4, 2003 and lived 3 amazing years until her passing on April 27, 2006.

In September 2002, my husband and I were thrilled to learn we were expecting our second child in May. My pregnancy was rather uneventful, other than high blood pressure. My blood pressure was usually on the low side, but since my first pregnancy was normal, a little high blood pressure was not causing anyone to be concerned.

At an ultrasound @ 20 weeks, the baby measured small, but since my cycle was not regular, we all just assumed I got pregnant later then we thought. My OB’s office did keep an eye on my HBP and at my 34 week visit on Wednesday, April 2nd, I was sent to the hospital for some blood work. After being seen in triage, they said I was 2cm dilated. The hospital also noticed I was having contractions at that point. I did not feel them, so after my tests, I was sent home.

On Thursday, April 3rd, when I woke up I had a significant amount of blood. I called my Dr. and was sent to the hospital to get checked. Again, I was having contractions – which I was now starting to feel. At this point, I was 4cm dilated. They gave me a dose of turbutaline (a medication to stop contractions), which did not stop them – so they gave a second dose – which worked. They told me the blood was probably from dilating. Once the contractions stopped, again I was sent home.

On Friday, April 4th, I had awoken to more blood, however it was not as much. Since my Dr. said it was probably from dilating, I was not really too concerned. I had a restful morning and laid down around lunch – when I woke up around 1pm, my water broke. I then called the Dr. (in a panic) and was sent down to the hospital. Once at the hospital, I was put on monitors and was not allowed to get up since my water broke. They did an ultrasound to see the size of the baby and said she was about 4.5 pounds. Within an hour, our dear little girl was born.

Lauren had excellent apgars – 8 and 9. She was having some issues, but my husband and I were thinking it was because she was born 6 weeks early. They took her to the NICU – in the meantime, Steve and I started making calls to tell everyone we had a baby girl and even though she was early, she got good apgars and seemed ok. After my time in recovery – they took us to the NICU to see her and that is when our world as we knew it changed.

They told us she had a cleft palette and that she was requiring oxygen. We were devastated. She was not the healthy little baby we were expecting and we didn’t know what to do. They explained that children with a cleft palette have something that is called Pierre Robin Syndrome. They also told us, that sometimes, the cleft can be associated with some other birth defects – in which case it would be called Pierre Robin Sequence. Steve and I looked up more about PRS to find out what we could do for our little Lauren. The more we read, the more scared we became. The Dr’s had told us they were sending out blood work on the baby to check her chromosomes. They advised us that the results should be back in about a week. During the next few days, each of her nurses would point out something else wrong – she didn’t open her eyes, she had a small chin, she had the start of an extra digit on her left hand, rocker bottom feet, they had noticed a heart defect, etc. They had also noticed that she had some tissue missing in her brain (Agenesis of the corpus coliseum). She was also having startle seizures and apnea spells.

We had Lauren baptized on Monday, April 7th. Over the next few days, we kept a close eye on Lauren and she started to become more stable. She came out of the O2 tent and was able to wear a nasal cannula for her O2.

On Friday, April 11th – when I arrived at the hospital, Lauren’s Dr asked me to get Steve on the phone. He told us Lauren had Trisomy 13 and that the children with this usually do not live for very long. He told us that it was more than likely she would die before her first b-day. He gave us time to absorb the news. The NICU arranged for a geneticist to come and talk with us. After reviewing Lauren’s medical records, she told us that even though most with Trisomy 13 don’t survive – some do… and since Lauren’s heart was in fairly good condition, that she could live longer.

It was at that point that we knew what we had to do. We had to give Lauren the best life she could have. We didn’t know if we were going to have her for 5 days or 5 years or more. We would give her all the love we had and cherish every moment with her.

Lauren was in the NICU for 3 weeks before we were able to take her home. When Lauren came home, she was on a monitor for her O2, she was fed through an NG tube and we were taught how to use a Habermann bottle. Lauren was on constant O2 and was given caffeine to help remind her brain to breathe so she would not have as many apnea episodes.

Due to my husband’s amazing efforts, we were approved for 40 hours of nursing in a 3 week period. It worked out to a half day of nursing a couple days a week. Lauren had colic and was up all night long. Those first few weeks were the longest nights of my life. Our days were mostly spent learning how to feed Lauren and just enjoying the time we had with her. She started doing better with the Habermann and she was eating rather well. I tried to nurse Lauren in the hospital, but the cleft palette made it difficult, so I would pump so that she would still have the benefit of Mommy’s milk.

About 3 weeks after Lauren was home, she had a severe apnea spell. Luckily Lauren responded to blow by O2 and we then headed down to her pediatrician. We were sent down to the hospital. We needed to find out what prompted such a severe apnea episode. It turns out, Lauren had developed aspiration pneumonia.

She was admitted on Monday, May 19th and was closely monitored during the week. On Friday, May 23rd, we got a call in the morning to get down to the hospital ASAP as they did not think she was going to make it through the morning. We had our priest came in and gave her a blessing. A few minutes later, she literally had stopped breathing and was very very blue. At this point, we had decided to stop the blow by O2 and let her go peacefully to God. All of a sudden she took a deep breathe and came back. No one could believe what had happened. Our priest stood in amazement and could not believe what he just witnessed. He still tells others Lauren’s story.

Lauren’s Dr.’s said that the aspiration pneumonia was caused by the feedings and we decided to put an NJ tube in. Lauren was improving, but we were not sure what the future held, so we decided to take her home on Saturday to be with her family. She had a few more severe apnea spells over the next few weeks – but they gradually became less and less severe.

We had to get tons of medical supplies, o2 tanks, feeding tube supplies, suction machine & catheters – we kept Lauren in our living room at that time and it looked like a medical supply store.

Steve worked hard to get us more nursing and we eventually got 16 hours a day- although they reviewed Laurens case every 3 -6 months to see if she still qualified for the care – that was stressful every time we came up for renewal. We were truly blessed to receive such wonderful care for Lauren.

Lauren was seen by many doctors – she had her pediatrician who saw her every month for the first year, she had a cardiologist that she saw 2 times a year, GI doctor that saw her every 3 -6 months, neurologist that she saw every 3 months. Plus additional dr appointments for her eyes, possible feeding tube surgery surgeon and eventually a kidney appointment every 6 months when she started having UTI’s every other month. These are just some of the doctors we had for Lauren.

She also had to get her NJ tube replaced monthly for the first 2 years – which was extremely traumatic for Lauren - then we realized we could just go when we started having issues with the tube. Then we went about every 2 -3 months. We kept the NJ tube because putting her through surgery for a permanent feeding tube would just be too dangerous.

Lauren received Physical Therapy, Occupational Therapy and Vision therapy. We had meetings every 6 months to go over her needs and to re-evaluate her progress.

Lauren’s major physical disabilities were that she was blind, she could not hold her head up for more than 30 – 45 seconds. She did not walk or talk. Her therapies helped her a lot and believe it or not – she was progressing.

During Lauren’s first year of life, we celebrated her b-day every month. It was amazing to see her growing so quickly and doing so well. However, my older daughter really didn’t understand why Lauren had more b-days in 4 months than she had in 3 years.

Lauren started off having startle seizures which eventually turned into Grand Mal seizure where it sometimes took O2 to help her. She was pretty healthy overall - considering all of her issues. She fought colds, ear infections and kidney infections constantly. We would know something was going wrong when she started having severe seizures.

Lauren was a very happy little girl – She loved to laugh, kick, eat her hands and ‘crunch’. She loved looking at bright lights. She watched Barney, Sesame Street and loved having books read to her. She LOVED music. She would bounce back and forth at any kind of music. Lauren loved when her sister, Emily would sit with her in her crib. Em would be all over Lauren and she would just sit and smile (most of the time). Eventually, we had another child, Matthew and she loved spending time with him as well.

On March 18, 2006, we took Lauren to the hospital for some stomach problems she was having. At that time, there were a lot of stomach bugs going around and we just figured she had one of those. She spent some time in the hospital and came home the following Thursday. She was still vomiting when she was sent home, but the nurses just said it was a stomach bug, and it just had to run it’s course. At home, she kept vomiting over the weekend. I took her back to the hospital on Monday. After a few days, it turned out Lauren had Pancreatitus. Lauren was in the hospital for a few weeks, eventually she got better and was sent home… She came home on Tuesday, April 11th. Lauren had a great week. She seemed much better and was laughing all the time. When I picked her up to change her, she would just giggle. Easter Sunday was wonderful. She had a great day and it was beautiful weather – so we spent most of the day outside watching her sister and cousins play… Our nurse came on Sunday night and again commented on how good Lauren seemed.

On Monday morning, I got Lauren ready to go to the nursing facility we had just started with and the transportation service came to get her. About an hour after they left, I got a call stating Lauren was having trouble breathing and she had a fever of 104.2… When I had gotten her dressed in the morning – she was fine. I went to get her and we had to call 911 to transport her to the hospital as she was really struggling to breathe. After a few x-rays – we saw the Lauren had pneumonia. As the week went on the pneumonia spread to both lungs and the dr’s were not sure she would make it through the weekend of the 22nd. She was on the strongest antibiotics and they were not helping. She did make it through the weekend – she was not getting much better – but she was not getting worse. On Tuesday, the 25th, I took Emily to school and when I got to the hospital – the dr’s told us there was nothing else they could do. At this time, Lauren’s abdomen had become distended and she was in severe pain… Without doing exploratory surgery, there was nothing they could do and we were not sure what was causing it.

On Wednesday, we had increased Lauren’s morphine to the point where we just wanted her comfortable. We meet with hospice and decided we would take Lauren home on Thursday. On Wednesday evening, my husband and I visited Lauren. I took him home and came right back to the hospital. I talked with the nurse for about 45 minutes and then went to sleep in the bed next to Lauren’s crib. About 45 minutes later, the nurses came over to me and told me that I should call my husband. I turned to look and Lauren and she was literally taking her last breaths. I called my husband and a neighbor drove him to the hospital. Within 2 minutes of my call to Steve, Lauren went home to the Lord. Her passing was very very peaceful and I could not have asked for more. Steve arrived and we held her for a while before leaving to come home.

Lauren’s funeral was 5 days later. The mass was beautiful and very touching. She was laid to rest in a Catholic Cemetery about 10 minutes from our home. She is buried near a statue of Jesus talking to 2 children.

Lauren’s short but meaningful life taught my husband and I so many wonderful lessons. She showed us how to love unconditionally, to be grateful for what we have, to cherish the people in our life because life is too short and most importantly she showed us how blessed we truly are – God trusted us to take care of one of his special angels. Lauren’s life was a wonderful gift to our family and we are forever grateful!

- - -
Lauren was born on April 4, 2003 Full Trisomy 13 at 34 weeks. She was 4.8 lbs and has had her share of obstacles to overcome. She is fed through an NJ tube continuously and now weighs 22 lbs and is growing like a weed. Lauren is legally blind and cannot sit up (yet), but she has recently started holding her head up for about 30-45 seconds...(which is wonderful!!). She receives OT, PT and Vision Therapy.. Lauren loves being held, listening to music and having her 3 year old sister play with her. Lauren is very happy and loves to smile and giggle. Lauren is a beautiful and amazing little girl. She surprises us everyday! We are so proud and blessed to have her in our lives!!!

Georgiann Duggan (Mom)
Southeast Pennsylvania

9-30-06
I wanted to share some poems/letters that were written for Lauren.

The first one was written by Lauren's cousin when Lauren was 9 months old and her cousin was 8 years old. For school, he had to write a paper on if he had 1 wish, what would it be:

"I Wish"
If I could grant a wish it would be for my baby cousin Lauren. I would wish she could be healed and be able to breathe better. She was born early so right now it is hard for her to do things. It is very sad. She even had to go to the hospital once. That's why I wish she could be healed.

If she was healed she would be able to run around with out having to take a break right away. She would be able to learn new things very quick. Lauren would be able to do harder sports. She could make friends faster. Lauren might even be able to hold her breath for 15 seconds. That is why I wish this wish.
________________________________
This one was written by a pallative care social worker during Lauren's second visit to the hospital during the 6 weeks before she passed. Lauren was in the hospital for her birthday and she had only met Lauren once or twice and she wrote this for her.

Smile - A birthday poem
Lauren Elizabeth, three years old
Blond-brown hair
Gathered in a soft ponytail
Sweet round face with eyelashes to die for
Meet across eyes half opened
Long, slender fingers reaching into space
What will you be when you grow up?
Will you be defined by life's cant's?
Can't sit up
Can't walk
Can't see
Time doesn't matter
You've always been a teacher
Teaching us:
It's important to live
Your strong spirit defies the odds
It's important to receive
You allow others to provide care and you accept your dependence
It's important to express suffering
You let us know when something is not right
It's important to keep perspective
Your world melts big deals into vapor
It's important to love
You show us what love is truly all about
It's important to smile, laugh and cry
You model how to freely feel
Thank you Lauren Elizabeth, Teacher
Your smile makes smiles
_________________________________

We had the 2 above printed in Lauren's Mass Booklet for the funeral. We also had Lauren's cousin read her brothers paper and a friend read the Smile poem. It was beautiful....
_________________________________________
This letter was written to Steve and I after Lauren passed - It was written by our good friend's sister who has severe cerebral palsy who is in her 40's and has always loved Lauren. Lauren passed away early Thursday morning and on Wednesday she started crying and told her sister " Lauren is going up to heaven today". And Lauren passed away that night.

Georgiann and Steve -
Hello, I'm just going to send you a sympathy letter.
I know how devastating it must be to lose a child who was special and filled with love. Lauren has had brought laughter and happiness into our lives, even though she has suffered many medical cutbacks in her whole (3) three years of her life.
She is now no longer suffering. She's resting at peace now. She will be remembered as a beautiful angel whom has had showed us the beauty of a smile, the love of the family, courage and friendship. Lauren has begun a new chapter and journey as she enters into heaven. She'll live in our heart forever.
God Bless you. Hope to see you soon.
Love always,
Timarie
_________________________________

And finally, this was the poem that was printed on the cover for Lauren's mass booklet. It is so beautiful - I just have to share it

Little Angel Missed
We miss our little angel
So infinitely dear
We shared a whole lifetime of love
In your short lifetime here.
If it had been within our power
We'd not have let you go -
And yet, we trust the One who said
He loved the children so.
And though the years will pass -
"Time heals all wounds" they say.
We'll always miss our angel sweet -
The one who went away.
But we can smile -
For up in Heaven
Where little ones are kissed-
We know your in Jesus' arms.
And never, ever missed.
___________________________

These poems are so special to us and I hope they have touched your hearts..

Blessings,
Georgiann