6-14-08
Thank you for wanting to learn about Josiah...We will try to put his early life into a nutshell:

It was during our 20 week ultrasound when his anomalies were detected. We talked to the dr immediately after the two hr ultrasound and he said they found "numerous anomalies". Barry's (Dad) first response was, "Abortion is not an option." I guess they didn't realize we were as adamant about our stand as they were about theirs.

We had a "rush amnio" to find if our baby was a T18 or T13. Our understanding was the sooner we would find out, the better the options were to help him. We didn't know the true medical reason was so the doctors could be more insistent to make the second trimester "cut off " for an abortion. Every doctor and of course the geneticist insisted on an abortion. We continued to tell them if our baby were to die, it would not be by our hands. We wanted our child to live. There was a doctor who did an ultrasound on the baby's heart because there a few holes. This doctor prayed and cried with us, and showed us the tender side and difference of a doctor who believes in our Lord Jesus. Since the perinatologist so strongly disagreed with delivering our baby, he asked to have a "Meeting of Ethics". We agreed and brought one of our pastors to this meeting which were to include the perinatology team of seven, the geneticist and the hospital clergy. When we arrived, it was solely the perinatologist and he said, "Myself and my other six associates agree not to scar your uterus for a child like that". Boom!! The hospital refused to deliver our baby. We were in our seventh month without a specialist and without a hospital to deliver him.

We had found our baby was a boy through the amnio and named him Josiah, which means: God heals. His middle name Joseph, representing Joseph where the brothers wanted him dead.
But God....(that's our favorite saying)...
But God provided a God honoring Christian perinatologist who during our first meeting asked, "Do you know what you're up against?" and ended with, "What do you want me to do?" Our response was, "Deliver our child, and we want everything possible done to save his life."

We also met with a pediatric surgeon because Josiah was diagnosed with an ompalocele. This means his intestines were born in his umbilical cord and his stomach did not close. We also met with the Neonatology Director prior to birth to tell them we insist that every possible be done to save our son's life. He listened to us for 15mins and for 1 hr and 45 mins, he told us how wrong we were and tried to tell us the reasons why we were wrong, and that we were being the opposite of good parents. We were bad parents to have our son suffer and to put our other two sons through the life of having a disabled brother. Doctors are not gods, no matter what they think!

Josiah was born Jan 14, 1998 via c-section to reduce the stress on him. Our family doctor received special permission to come to the hospital she is not associated with and hold one of Deidri's (Mom) hand, while Barry held the other. When Josiah's precious little "kitty" cry was heard, we just sobbed to know he was born alive. As Deidri was being stitched up, a doctor leaned over the curtain and said, "If this child goes home, don't bother calling 911, just let him die." What??!! Our little boy was going into a crib, not a casket! Barry was approached by yet another doctor while he was admiring Josiah, and the doctor shrugged his shoulders and said, "I don't know why you even had this baby" and walked away. Some doctors can be extremely mean, and we pray you only meet the good and soft spirited ones. They insisted for us to sign DNR (Do Not Resuscitate) papers. We refused!

By God's grace, a nurse asked Deidri if he was getting a Gtube (we had never heard of a Gtube). Praise God she explained it! At the time of his omphalocele surgery, Deidri asked for the authorization forms for the Gtube while the ompalocele authorization papers were being signed. She was told he wasn't getting a Gtube. Deidri asked how long would it take since the doctor was putting his intestines back in? The answer was 10mins.. We insisted on the Gtube to be placed during the surgery. One evening one sweet nurse had to "bag" him and stimulate him to breathe again. Had we signed the DNR papers, Josiah would've died at the age of 6 days. He also had apnea issues.

While in the hospital he was also diagnosed with holoprosencephaly.

Josiah came home 9 days after being in NICU. We had resistance from many doctors, but the nurses were always loving and tender. A nurse came to the house the next day, and said we don't have much time with him, that we could take him out to church. The next day, our congregation at the middle service (over 3,000 people), prayed and cried for Josiah as our pastor held him up before the Lord and dedicated his little life to Him.

That was a big nutshell, but today Josiah loves the computer, TV, songs, riding a bicycle and can use a walker... Is he disabled? Yes. Is he different than other children? Yes. Does he understand us? Yes. Does he do chores? Yes, one: he closes the dryer door. Can he fill the room with his laughter? Yes. Does he bring a huge smile to his family? Yes. Does he go to school? Yes. Did we have any children after Josiah? Yes. Is life different after him? Yes; life is different after any child. Do we regret any of the medical decisions as his parents? No.

We praise God for the life Josiah has, as we do for our other three children.

We were told Josiah would die in utero; that Deidri would miscarry; that he would die at birth; he would die within days; his life expectancy is 4 months...
But God has another plan for Josiah....
- - -

Christmas 2002

Dear Josiah's Doctors & Nurses, Just to remind you, through all the many patients you have, Josiah is a Trisomy 13 little boy born January 14, 1998. If you have not seen him recently, we're sure you'll enjoy his recent picture included. What a glorious time of year to be updating you on his progress. Though "specialists" and geneticists at another hospital thought "interrupting our pregnancy would be much better for our family", to the extreme that they refused to deliver him, abortion was never an option. This little child has been an incredible blessing to our entire family, and we believe he has touched some in the medical field also.

Physically: Josiah is diagnosed as a Trisomy 13 with holoprosencephaly and a Dandy-Walker cyst. His left eye has a coloboma and he is now fitted with (the cutest little) glasses. He has hearing aids, a "flattened" windpipe, and one vocal cord is paralyzed. His cleft palate has not been repaired yet, but his lip has. A V.S.D. is in past, and has dextrocardia. He still uses a G-tube, and is just the stoutest little thing ever. Last but not least, he has the cutest sixth toe on his left foot.

Medically:
You may remember that he is under the care of a fabulous Pediatrician, Dr. Regina Brown, who herself has been blessed with an older Trisomy 13 boy. Josiah had surgery for his omphalocele and a G-tube. His second surgery included cleft lip repair, fixed his tied tongue, a bronchoscopy, and PE tubes were put in place. The third surgery was a very successful fundo. We even noticed that his hair and nails were growing faster after that surgery. His last surgery was a successful repair of his V.S.D.

Hospital visits in 2000: We were able to visit CHOC at Mission for the first time in February. My quick witted husband said, "See, and you didn't think you were going to go anywhere for Valentine's." Not as though we like to boast about our "Hotel CHOC" visits, however it was nice to be loved and cared for there too. Thank you Mission. The most recent surgery was in May for his V.S.D. repair. This surgery once again, proved Josiah's stamina and love for the wonderful care given at CHOC. We stayed in recovery longer than expected, but I believe he just thought his nurses were cute. He set anew record for the longest SVT for his age; 28hrs. (A record we pray no other child will come near!) Through the hours, the Cardiology team did a fantastic job, even consulting with another team in San Diego. The right dose and combination of medicine came together and worked on our little guy so he was able to finally rest. Thank you to all working in PICU for your diligence!!

Developmentally: Josiah has proven previous Doctors' predictions and even the CHOC Neonatalogy Team's belief of his disposition to be wrong! To compare to what we were told, developmentally, Josiah is off the charts!! We are blessed to say, he has the most endearing personality! He sits on his own, crawls, is learning to pull himself up and is working with a walker. Now how about that?! Starting January 16, 2001, he will be going to school. We are presently finding what school is best suited for him.

Socially: Josiah needs to be in the middle of everything. If his brother and sister move their play to another room, he will follow them. When the "bath-time" song is sung, and "It's time to brush our teeth" is called, he will come to the bathroom. Bath time is playtime and he loves to have his hair shampooed. He was brushing his own teeth for a while, but that has recently stopped. Maybe just proving to be atypical 2 year old and showing his rebellious side. Kissing has become even more passionate and will embrace your neck while he kisses you. Even still, he prefers kissing women only (do you blame him?). My husband even once said, "It's a good thing you're my son, otherwise I'd be jealous." His distinguishable laughter fills the room. For those who don't know any better, they will turn and look, but once they see him bucking with a smile from ear to ear and his crescent moon eyes beaming, they smile at his frolicking.

Our plea:
To any of you, that may come across a parent about to raise a Trisomy 13, let them; encourage them, give them hope and peace that they will be blessed with the endurance to handle such a special child. And could quite possibly be their "favorite" for every reason. If any of you would like to do a study or have any questions to better yourself on this syndrome, please, please call us. We would love to show him off and update you on the possibilities of this syndrome; if only the child would be allowed to live, instead of being aborted. After all, it is a child not a choice.

Thank you to all who have been there for our little guy and we will continue to update you at this special time of year. You have touched our lives in many ways. Each one of you, in your very own way, thank you.

God's blessings on you and your family during this most joyous time of year, Christmas.

Barry and Deidri Alderson
949-548-9099
2137 Sabot Cove
Costa Mesa, CA 92627-1799