Westin Michael Pitman

They flew to Anchorage Alaska for genetic counseling and an extensive ultrasound with Maternal Fetal Medicine on Decemeber 31st. The Specialist confirmed the findings of Spina Bifida, along with what looked to be an Omphalocele (intestines on the outside of the abdomen with a covering!) Sever Hydrocephalus, Chiari II Malformation , Club Feet, issues with the right kidney and they were unable to find the bladder.

The beginning of February they finally received a call from the Genetic Counselor with the results. Everything came back completely normal! Westin was going to be "ok"! Months were spent researching Spina Bifida and Omphalocele. Everything was completely survivable with surgery! They were prepared and ready to take the bull by the horns and give Westin the best life possible! After lots of discussed options with the doctor on where would be the best place to receive care with all the issues he would be facing it a referral to Vanderbilt Children's Hospital in Nashville Tennessee was placed. It was close to family to help with the older two boys and it is one of the top hospitals that deal with Spina Bifida in the country. After Westins dad came back home from training they packed up and moved the family down to Tennessee from Alaska. The day after arriving March 23rd, I had my first extensive appointment at Vanderbilt Children's.

They stated that Westin had what is called OEIS. A very rare complex that only affects 1-400,000.

O is for Omphalocele (intestines and some organs outside of the abdominal wall with covering.)

E is for Bladder Extrophy (bladder outside the abdomal wall split in two)

I is for Imperforated Anus (No Anus opening and intestines not connected)

S is for Spina Bifida (opening in the spine that causes a fluid fill sac of spinal fluid and nerve cords.)

Along with those things he had a unformed pelvic bone, club feet, and they could not see gender.

They recommended twice a week visits and ultrasounds to follow his Hydrocephalus and make sure that we met with all of the surgeons who would be working on him once he was born. From what they were seeing he was in a very sever category with all of his issues but they could only tell so much by ultrasounds. So everything was left to more waiting. Waiting until he was born! During the next few weeks they found an amazing support group of others who have children or they themselves have OEIS complex. They were such wonderful support, seeing and hearing first hand the life Westin would be faced with. The struggles, the hardships, the many many surgeries, but also the miracles of each one of these wonderful people! They are survivors! They are the true definition of a miracle and that gave us so much hope.

Westin Michael Pitman was born crying at 1:55AM on April 27th 2015 at 34 weeks and 6days gestation! It was such a relief to his mother and father to hear his cry. In that moment nothing else mattered! He was okay and he was alive!

The next few days were a big blur. They were able to see him the next day before he was taken into his first surgery. His first surgery was to create a ostomy and to put his bladder back together. This is very common with babies that have OEIS.

He did fantastic during his surgery and everyone was extremely pleased with the results! The next day he had a MRI to determine the route that the pediatric neurosurgeon would need to take to close his Spina Bifida Myelomeningocele. That evening the Neurosurgeon and the Chief Dr of the NICU came up to the recovery room of his mother to discuss their findings. As she stood there with her husband looking at photos of my son’s brain they couldn't help but feel like they were watching themselves like a fly on the wall. Once again, bad news only this time it was the absolute worst a parent could get. Everything they were saying was completely shocking and heart-breaking.

They told them that the hydrocephalus was so severe that it caused Westins brain to not form correctly. That the tonsils of the brain that tell you when and how to breath were not even close to where they were suppose to be. They said he isn't able to breath on his own and that he was not expected to live longer than a week or two. They recommend placing him on comfort care and loving on him as long as possible. The doctors were afraid he would pass on the operating table if continuing through with the spinal surgery. Everyone agreed and decided after a few days they would put him on comfort care. Over the next few days they allowed immediate family to visit him including his big brothers.

On Monday the 4th of May Westin was placed on comfort care. His father and mother sat in a room for 3 days taking turns holding their sweet boy! Loving on him, singing him songs that his mother’s grandmother sang to her, reading him books that were read his brothers, and kissing his beautiful face. Everything they could possibly think of to do, they did. Even taking him outside to experience the beautiful fresh air and listen to the water shoot out of the roof top fountain. It was so peaceful! Throughout the next two days he dipped low on his oxygen levels but he stayed with them! The night of the 5th the nurse made his mother lay down and sleep. She swore to wake her up if he dipped low. After a few short hours of sleep they woke to their favorite nurse Ms. Jane saying it was a good idea to start their day! Westins mom held him for 4 hours straight while his dad sat close and held his tiny hand. The nurse then came in to let us know that Westin was very low and he probably wouldn't be with them much longer. I can swear to you that GOD was with them during this moment. A peace came over them as she rocked my baby boy and kissed his cheeks! They let him know it was okay and that they loved him more than anything.

At 9:15AM on May 6th 2015 their sweet beautiful little boy Westin Michael took his last breath in his mother’s arms as his daddy held his hand. It was the worst thing they have ever experienced in their lives but by far the best 10 days of love they will ever have. Westin is a true blessing from God! He didn't get to be with us on this earth for long but he showed us what real love was!

His life was so short but he impacted so many. Westin was born at 35 weeks gestation with a very rare complex called OEIS. This complex affects 1-400,000. Westin lives on today as he also was able to donate his heart valves to save a 8 day old baby girl baby! He will forever live on in our hearts, and in another!

Westin blessed us with 10 amazing days on this earth and even after his passing he continued to spread his love through organ donation.

We ask that you join us in continuing to spread the love in his memory by paying it forward with one or more acts of kindness.