I found my world spinning out of control on December 20, 2015. It was early afternoon in Fairbanks, Alaska, as I was sitting in a tiny room with an ultrasound technician hoping to find out the sex of baby number three.
What I thought would be a happy day turned into one that felt like an out-of-body experience.
As soon as the technician left the room to get the doctor, I knew something wasn’t right. When the doctor returned, he went over the scans, telling us all the things wrong with our baby. It was heart-wrenching. Trying to wrap our heads around the big medical terms he was using, like Spina Bifida, Hydrocephalus, Clubfoot, and Gastroschisis.
I had no idea what this meant.
The only thing that stuck out to me was when he said babies with Spina Bifida do not have normal lives, especially when Hydrocephalus is involved. They will usually offer you an abortion. I didn’t know what to think. My obstetrician was notified and she quickly got me scheduled to see a maternal fetal specialist in Anchorage, Alaska on New Year’s Eve.
During the next few days I buried myself in research, finding out everything I possibly could about the birth defects we were told our baby had. On December 31st, we took the forty-five-minute flight to Anchorage and spent the day in the maternal fetal specialist’s office.
We had an extensive ultrasound where they found a few more things to add to the already long list of defects. I also had an amniocentesis to rule out Trisomy 18, a fatal genetic defect. During this appointment, I was asked if I wanted to have an abortion.
I couldn’t believe what I was hearing. How had it come to this? I had two very healthy children at home. How could this baby be so different? What did I do so wrong during my pregnancy to cause this? My mind was everywhere, but I knew deep down in my soul that this baby deserved every chance I could give it.
Who am I to decide when it’s someone’s time to die? I declined the abortion and told them it was not an option.
The next couple of weeks were awful. We tried to wait patiently for someone to call us and give us the amniocentesis results. Time passed so slowly. We stayed hopeful and continued to study up on all the defects, the number of surgeries our baby could possibly need, and the limitations that we could be facing.
During my research I stumbled upon a support group for families that have children with Spina Bifida. It turned into a much-needed blessing. They were very encouraging and brought us so much hope. Learning how common Spina Bifida was blew my mind. Affecting as many as 1 out of 1,000 babies. We found out that it isn’t a death sentence. Children with Spina Bifida grow up to become just like everyone else they just have a few more obstacles they must bravely conquer.
Knowing there was a chance of everything working out kept us hopeful. I had several appointments with my OB and she also brought up my choice of abortion if the baby had Trisomy 18.
Abortion was something I knew I couldn’t live with, but I am human and my emotions were everywhere.
Finally, in the middle of February we got our amniocentesis results! Our baby did not have Trisomy 18. The genetic testing we did was completely normal. On top of the amazing news, we officially found out we were having another baby boy. We were thrilled. We decided his name would be Westin Michael and we were ready for whatever was going to be thrown our way.
With Alaska being so isolated, they did not have the capability of treating a baby that would need multiple surgeries right after birth. We received a referral to Vanderbilt Children’s in Nashville Tennessee.
They have one of the best Pediatric Neurosurgeons, who specializes in Hydrocephalus, along with a top ranked NICU and Care Team. Not only did they have the care that Westin needed after he was born, but it brought us closer to our family for the extra support.
On March 22, 2015 we jumped on an airplane and headed to Nashville. It was a very long journey but we were hopeful that they could help Westin. On the 24th we had our first appointment with the Maternal Fetal Medicine specialists at Vanderbilt Children’s. We were expecting to find out which surgeries Westin would need and if I would be able to have him naturally. We spent the first hour getting an extensive ultrasound, documenting every inch of Westin they could. After the ultrasound, we met with the Chief of the NICU and a few other MFM doctors.
We found out that Westin’s case was so much more than we expected. He didn’t just have Spina Bifida and Gastroschisis, he had a very, very rare complex called OEIS.
O is for Omphalocele
E is for Bladder Exstrophy
I is for Imperforated Anus
S is for Spina Bifida Myelomeningocele (Clubfoot, Hydrocephalus)
This complex affects 1 out of 400,000 babies. It’s such a rarity that they really have no medical information on this complex besides what each defect is. But we were told it can be survivable.
The Spina Bifida group I was a part of, pointed me to another mother who just happened to have a baby boy with similar defects. I found out there was another much smaller support group of people with this complex. It was so amazing to have others know exactly what we were facing. Finding out there are several children and grown adults living normal lives throughout the world with this complex gave us so much hope for Westin’s future.
On April 26, at 10:30 p.m., my water broke at 34 weeks and 3 days. We raced to the hospital and I was prepped to have an emergency classical caesarean section.
Our beautiful baby boy was born, crying, on April 27 at 1:55 a.m.
The next two days were great. He was beautiful. Even hooked up to all the tubes and monitors, he was so strong! He had his first surgery to close his bladder, place his intestines back into his abdomen, and make him an ostomy. The urologists were very pleased and said everything went beautifully during his surgery. We were so relieved that everything was going so well. The next day he had an MRI to determine how to fix his Spina Bifida Myelomeningocele and to decide if he needed a shunt to help relieve his Hydrocephalus.
That evening the Pediatric Neurosurgeon, the Chief of NICU, and a few other doctors requested a meeting with us. I should have expected it wasn’t going to be a good thing as all the doctors huddled into my recovery room. We stood there as the Pediatric Neurosurgeon went through all the scans with us. The words that came out of his mouth were not something we expected with how well everything had been going.
He said that the Hydrocephalus caused by the Spina Bifida was so severe so early on it caused Westin’s brain not to form correctly. They had him hooked up to brainwave monitors and there was nothing. They proceeded to tell us that they have had to bag him several times throughout the day even being on a very high amount of oxygen. He was unable to breathe on his own even with the extra help.
All the surgeons agreed that he would not survive to the end of the week. If he did he would need surgery to help release the spinal fluid from his brain because it would continue to build up. However, the chances of him surviving the surgery were less than 2%.
As soon as they left the room everything they said hit like a ton of bricks. It was earth shattering! We were so ready to take care of Westin. Give him the best care we could. We planned him! We wanted him! We would do anything for him! We were living a nightmare. My baby was going to die and there was nothing anyone could do. My knees hit the floor and as tears poured out of my eyes I begged God to save him. Why is he letting this happen? How could he take my baby when we wanted him so bad?
Over the next few days we invited our families to come meet our beautiful baby boy.
The NICU let our sons come meet Westin and have pictures made with him. It was such a hard, but amazing day. It is the only time I will ever have all my boys together. That my little family of five would all be together in one room.
My husband and I spent the last few days of Westin’s life holding him. We got to take him outside, read him books, and I sang him the same songs my grandma would sing to me when I was little. I sat there constantly rocking him, and praying for God to give me the strength to let him go.
On May 6 at 9:15 AM, my beautiful baby boy took his last breath in my arms while he held his daddy’s hand. If I could have sat there holding him forever I would have. I lost a part of my heart that day.
My husband and I decided to donate Westin’s organs in hopes of helping another family from experiencing a loss like we had. We had been grieving and struggling to know what God’s plan is with all this pain we feel from losing Westin. Then, 18 months after we buried our baby boy, we found out that his heart valve was placed into a 6-day old baby girl. Westin had lived his short life to save another! A piece of him will forever live on in that little girl.
Not a day goes by that I do not think of my third child, my forever baby, Westin Michael. He taught me to love deeper than I ever thought imaginable. To never take time for granted, and that having hope gets you further than you will ever know.
This story was submitted to us by Amanda P.