This story is a compilation of E-mail to various people by Carol Green, Newborns in Need National Founder, regarding Spencer.

As you read you will see the timeline unfold and experience this journey with her, through her eyes and heart.  Spencer is very precious to all of us.

ANXIOUSLY WAITING FOR SPENCER, THE BEGINNING...

When Spencer was still just a smile on his parent’s faces, they went to the doctor and waited for a sonogram - the doctor took a long time.  Brenda was at the end of her first trimester. Becoming concerned at the length of time it was taking for the doctor to read the sonogram, they asked: “Is there any abnormalities in the sonogram?”  The doctor then replied that he believed he was seeing signs that Spencer was a dwarf baby. This was the first inkling Jack and Brenda had that their son was going to be a very special little baby. 

When they returned later for a additional follow-up sonogram,  they were told that the two telltale signs of dwarfism were showing up in their baby’s sonogram.  The signs were that Spencer’s chest cavity was smaller than his abdomen and there was a large amount of amniotic fluid because the baby wasn’t drinking and swallowing in utero.  The doctor offered on three separate occasions to terminate Spencer’s life.  Jack and Brenda and their family were thrilled and excited to welcome Spencer into their family because they knew he was a baby boy and knew he would be a dwarf - the children (not fully comprehending what that meant) thought it would be fun to have a dwarf for a brother in the way that children adapt and unconditionally love. With subsequent visits to the doctor, and learning more about Spencer’s condition, the emotional roller coaster started since they would not know until Spencer’s birth as to whether his condition was fatal or not.  The medical specialists in the field of hypochondrogenesis know there is a mutation in the gene that causes this fatal dwarfism, but haven’t found it in Spencer yet, even though they know it is there..

NEARING THE TIME OF SPENCER’S ARRIVAL.....

The narrative begins.......One little one about to be born has been diagnosed as a dwarf and his parents were frantic, not knowing if there would be clothing small enough for their son. He isn't expected to live long, but it would be wonderful for him to be warm and cuddly while the Lord allows him to remain here for a time. Brenda and Jack already have 7 children, but this is their first one together, since 6 children were from Jack's first marriage, and 1 was from Brenda's first marriage. They were really looking forward to the birth of their baby when the ultrasound revealed that their baby was a special needs baby.

I am so proud of them, because of the fact that they have been advised three different times by the doctor that it was not too late to terminate the pregnancy and their response was “He’s a keeper”. They made this decision because of their religious beliefs that dictate that God has granted unto man the power to procreate or give life, but He has never given to man the power to take innocent life.

Their comments were: “If Heavenly Fathers wishes to bless us to be able to keep Spencer, we will be grateful, but if He thinks it is better to take Him home again, we will be thankful for the sweet moments we have had together.  His will be done, we do not wish to play God”.

I’M HERE...I’M FINALLY HOME....

Immediately after Spencer was born naturally at Cox Medical Center South on Nov 1, 2003 in Springfield, MO the attending doctor gave Spencer to the Neonatal Intensive Care Unit (NICU) child specialist who tried to get a respirator down his throat to help him to breath.  Then they took the baby out of the birthing room and directly to intensive care leaving Jack and Brenda to wonder about the condition of their newborn son. 

SAYING HELLO AND GOODBYE...

After about an hour, the doctors came back and pulled up a chair to talk to Jack and Brenda. The nurse who helped deliver the baby was still there showing kindness, love and support.  The doctor sadly said: “I have done everything I can do for your baby and it looks like he’s not going to make it”. After hoping for so long that a miracle would happen in their tiny son’s life, they cried as the sadness of being separated from their precious little one - having to say goodbye before they hardly had the chance to say hello, was almost too hard to take. The doctor thought that Spencer would only life a few hours as as realization sank in, the sweet nurse who had so lovingly cared for Brenda through Spencer’s birth and after, came over and held Brenda and cried with her. Jack said:  “The nurse was there for us, she was an angel from heaven right here with comfort.”

In order for the rest of the family to see Spencer and say goodbye, the doctor was willing to bend rules to bring in the entire family into that area of the Neonatal Intensive Care Unit as they expected the baby to die quickly.  It was 2 AM when a family friend brought the 4 youngest children to say goodbye to little Spencer, the three older children were out of state and not available. The baby at that time was only 2 hours.  When you look through the photo album, what you are seeing is the family with Spencer when he was only two hours and they are saying what they thought was a final goodbye.  Even though they are distraught you can see the love.

Michelle, a family friend, had lost a baby daughter previously and wanted to do everything she could for the family, brought the children in the middle of the night to say goodbye to their little brother and commented that felt like she was part of the family - she is a very sweet special spirit that is always ready to help.  The hospital staff was wonderful and took many pictures of the baby with the family.

The nurses were so kind and sweet to Spencer, they gave him a bath and washed his hair so he would look good for the pictures and to meet and say hello and goodbye to his family.  After the visit was over, the doctors said that they would take slowly take Spencer off the ventilator and he would gently slip away. 

SURPRISE....MIRACLES OF MIRACLES...

Spencer had other ideas - he didn’t come all the way here, only to leave again.  Instead of slipping quietly away as the source of life giving air was gradually removed, his condition started to improve. It confused the doctor because Spencer was surviving, against all odds, instead of passing away as expected. At this point when the doctor realized that as the ventilator was being turned down, Spencer was doing his part in working with the machine to try to breathe.  The doctor made an important turning point decision, rethought Spencer’s prognosis and called in a genetic specialist to review Spencer’s case. The diagnosis was this - he has hypoachondrogenesis which is so rare that there are only 100 known cases in the world.  These cases were not well documented, as to how the children were treated and the longest any baby with this condition has lived is  5 months. Spencer has several compounding conditions connected to this diagnoses, but the doctors are now consulting with specialists in Los Angeles to attempt get more information to substantiate the initial prognosis and consider treatment..

EMOTIONAL ROLLER COASTER...

The family cried again when they heard that there wasn’t much hope, Spencer was alive for the time being but according to known medical information, he would not live beyond 5 months.  Nancy, the nurse who helped with Spencer’s birth, gave up her day shift to be Spencer’s nurse in the evening. Because of her love for Spencer and his family, she even spent her day off buying a little toy for Spencer and bringing it to him. When Brenda caught in her the hallway when she was coming out of the NICU and Brenda was about to go in, she asked her why she was there on her day off, she replied: “Oh, I found this soft cuddly toy for Spencer and just couldn’t wait until it was my turn to work again!”

Jack’s comment regarding wonderful people like Nancy was: “ These are outside lives that have touched our lives, and we love them just like our own family - they are included in our hearts. just as Newborns in Need does cares for each and every baby they serve, the families of the babies learn to love the ones who serve them. Service is God’s way of teaching us love, helping us to be more like him..

SO, LITTLE SPENCER, HOW ARE YOU AND WHERE DO WE GO FROM HERE?

When Spencer suddenly started improving and breathing well with the respirator, he surprising the doctor and causing him to rethink his position and call in a genetic specialist who is well renowned in this field. The doctor faxed the Spencer’s information, brays and photography to the genetic specialist, Dr. Braddock, who came on a Tuesday to meet with Jack and Brenda.  He confirmed the diagnosis and commented that Spencer had had left the typical behavior of a child with this particular disease because he was starting to breath on his own and improve, when he really should have expired, puzzling the doctors and causing them to search for further information. 

This was the turning point for the medics where instead of believing that Spencer was going to pass away immediately, they wanted to do all they could to sustain his life. The family had been on an emotional roller coaster all the way through Spencer’s short journey through life, but at least now they had hope that everything that could be done for Spencer, would be done.

The decision were made on how to best help Spencer to sustain life, a tracheotomy was discussed for Spencer so he could breathe. The cleft palate inhibited his breathing and he also had an inverted chin that may be the cause of the airway being blocked because of his tongue.  Conjecture was that with a tracheotomy in Spencer’s throat, it that may help his breathing but only if his lungs were developed enough or he would have to remain on a respirator for the rest of his life.

THE LEARNING CURVE...

Jack and Brenda have tried to learn everything they can about their son's condition, Jack is a carpenter and had begun to get ready to made a tiny casket, if needed. Newborns in Need provided the beautiful satin and velvet fabric to line the casket with. We are hoping that it won't be needed at all, and if needed, not for some time. The doctors keep vacillating about the baby's condition. I think the not knowing is worse than knowing.

Jack and Brenda have placed their hearts in the Lord's keeping and doing the best that they can in this situation - I am so proud of them. Jack seems at peace and Brenda is doing well, but - understandably - occasionally sheds tears and it is so nice to have people who show the family compassion and love. Then she rallies and continues to try to care for the rest of her children. They are not wealthy - their house is always neat and clean, and their children well cared for.

Jack and Brenda are typical of some of the families that Newborns in Need helps. Jack and Brenda are doing a good job of raising their children but with the added financial stress of Spencer’s situation, the budget simply wasn’t set up to stretch that far..

HE’S HERE, OH, HE’S HERE!!...

I just got off the phone with Jack, as we were talking I was busily writing everything down so I could tell you what he said.

Spencer was born last night in Cox South Medical Center  in Springfield, MO and is not expected to live for very long. He weighed 5 pounds 8 ounces  (a surprise, we all expected a tiny preemie, and is 15" long) His full name is Spencer Gordon Lewis. The hospital is doing tests on the baby to see how to help him. Prognosis is not good. He is being fed intravenously and is on a respirator. Here is what is his medical challenges are - the list is horrendous and the worst I have ever seen in 11 years of Newborns in Need service. He is a dwarf and his chest is barrel chested and malformed, his lungs are underdeveloped and he has an inside cleft palate in his mouth where the roof of the mouth is open, this has impaired functioning of the tongue and he can't nurse or drink, hence the IV. Spencer's intestines are down in his scrotum and he has a massive hernia that needs repairing, he also has club feet. The doctors said they were surprised that he lived this long. What they are doing is sending faxes and E-mails all across the country to specialists in neonatal care to see if they can save Spencer's life and what needs to be done first, if they can do anything.

Jack was calm and reassuring (I was supposed to reassure him, but it was the other way around!). I know how much Brenda and Jack wanted this baby. He says Brenda just sits with the baby singing it songs and trying to stay strong. Brenda sings beautifully - she performed at the Newborns in Need convention and had us all in tears - she is truly gifted with music. She sings mostly gospel songs.

Jack and Brenda's children are: Spencer newborn, David 5, Ezra 8, Nanny 10, Jay 13, Daniel 19, Cara, 21 and Rachel 22. I asked what kind of things the children like and he said "anything". I pressed him for a more involved answer as it's hard to provide things for someone you don't know.  He said that all of the children love to draw and sing. That's all I managed to get out of him *grin* Oh well. He did say that Nanny wanted an American girl Samantha dolly so bad. Apparently she has been saving her pennies to get it, but has a very long way to go..

What I thought might be a wonderful thing to do for this family is 'make' Spencer for them. I mentioned the possibility to him and his voice got very quiet and gentle and he said that that would be a wonderful miracle. He told me that the hospital had taken tons of pictures of the baby and he would get me a CD of the disk. He said that Spencer was a beautiful baby from the neck up you couldn't tell there was anything wrong because the cleft palate is inside. He said that Spencer had strawberry blonde hair (Jack is going bald and said that Spencer got all the hair Jack had been losing!). The baby has Jack's forehead and ears, and Brenda's eyes and nose. Brenda has big beautiful eyes. Because he is a dwarf, Spencer has a 15 1/2” head. I thought that perhaps a baby that looked like him would be a family heirloom they would cherish. We will have to look at the pictures to see if the baby looks like any of the Berenguer molds.

Jack is deeply religious and his belief in a loving caring God is helping him go through this difficult situation. He is a spiritual giant and a very good father.

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