Harrison Family
Tennissee, USA

Lily’s NAIT Journey

When I found out I was pregnant with Lily, I was already nervous because of complications with my first child due to preeclampsia and I was approaching my mid-thirties. Little did I know, that was the least of my worries. After I had several appointments, the fear turned to excitement. We had found out we were having a baby girl! As my anatomy scan was approaching, we started to notice a few changes in my pregnancy, I was retaining excess amniotic fluid and the swelling was spreading to my other parts of my body.

I received a call immediately after the scan from my OBGYN with concerns of fluid in several ventricles of the brain, and was immediately referred to an MFM for further testing. When I was seen by the first MFM, they were almost certain the extra fluid they were seeing on the brain was caused by a condition called Dandy Walker along with hydrocephalus. I went home terrified and scared, I could not help but wonder, Why my Lily? My boyfriend and I did all the research we could, preparing to take care of a special need child.

Because of the severity of Lily’s condition we were the referred to another MFM at Vanderbilt Children’s Hospital in Nashville, TN. As my pregnancy progressed, we were getting a lot of different answers from doctors that were still puzzled with the images we were receiving. Our new doctors were not sold on the diagnosis of Dandy Walker and hydrocephalus. With a whole new team of doctors came lots of new images, blood work and regular anatomy scans. At 36 we were finally able to be approved for a fetal MRI, ourselves and the doctors knew this would give us a better idea of what was going on in Lily’s brain.

The results were heart breaking, Lily had suffered a brain haemorrhage around 20 weeks in utero. The doctors explained to us with the condition of Lily’s brain the likelihood of her survival was slim to none. After the brain haemorrhage her brain stopped developing all together and spinal fluid was slowly building in the ventricles of the brain. The question was still, Why? What caused this? I knew we were at the best hospital on this side of the United States, and i just didn’t know why i still didn’t have the answers. After we met with the MFM doctor Grace at Vanderbilt Children’s he called me and said he just needed to do ONE MORE TEST, but he would need both Devon and I to give blood. He explained it could be a rare condition called Neonatal Alloimmune Thrombocytopenia (NAIT), although he expressed with the rarity, he was doubtful this was the cause, but still wanted to check. He then explained our blood would only be able to be tested in one lab in the United States, in Wisconsin.

Trying to be proactive, I began to research the condition, which was not as easy as the Dandy Walker and Hydrocephalous. I had to dig for information, I could not find much at all. Due to all the complications, we had a C-section planned for April 4th, 2023. Delivery was approaching and we still did not have any answers, we just knew we wanted to do what was best from our baby girl. We wanted make sure we do our best to love her no matter how long it was we had with her. We prayed, screamed, and cried just with confusion. The Friday before delivery, March 30th, Dr. Grace called with the results. It was finally confirmed the diagnosis of NAIT, we were also in the 100% group. The silver lining was we now KNEW what we were up against once Lily was born. He explained now we will be prepared for her to receive a blood platelet transfusion immediately after birth.

At the time, we still did not know how long Lily would survive due to the condition of the brain. We were prepared for the worst; the doctors were also expecting the worst. I remember hearing her tiny faint cry in the delivery room, and I was overwhelmed with love and a new hope. She made it through delivery and was immediately put on high respiratory support and rushed to the NICU for the blood transfusion. The doctors told us she would need several transfusions before she would begin to make her own blood platelets, but not Lily, her little body went to work immediately. We went through two months in the NICU of tons of testing, MRI’s, EEG’s, X- rays, you name it, we probably did it. I will never forget the day the doctors set up a meeting with us and expressed their opinion and they didn’t think there was anything else they could do for Lily.

We then made the decision to take our baby home with hospice care and love her while we can. Boy, I’ll tell you what, Lily had other plans for all of us. Despite all the diagnosis of loss of vision, the high respiratory support she required, the seizures, cerebral palsy, and the feeding tube she still stayed strong. We were told she would never be able to be weaned off the high pressure (AIRVO) machine, and she did!

As we began to reach the end of the prognosis period, we thought maybe we just did not give Lily enough credit for what she was going to be able to do. I mean this little girl does not have a cerebellum at all, very little brain tissue and a small and displaced brain stem and continues to amaze me every day. Lily was still suffering from severe hydrocephalous due to the functioning of the brain stem not releasing the spinal fluid that was building up and beginning to put pressure on her good brain tissue.

At this point we needed to give her the shot of life, and go through with the surgery of a VP Shunt. We knew in order to do this we needed to get her oxygen intake down, and there was a very real chance she would not be able to come off of the ventilator after surgery. Something just gave us peace and we felt like Lily was going to be fine. God has a plan for this child, for all our NAIT babies. As she approached 6 months we had decided to go through with the surgery. November came and we were getting ready to go into surgery, and her head was measuring at 73.5 cm. We prepared her for surgery and watched her get rolled back, those few hours waiting felt like a life time. Like lily usually does, you guessed it, SHE MADE IT THROUGH. We are currently still on hospice due to the unpredictable state of her brain, but we are approaching her year birthday!

With the support of the great doctors and support of the wonderful ladies of naitbabies.org I was able to educate myself and learn more about NAIT. It is hard to believe that if I had only been tested sooner things could’ve been different for Lily. Then I realize, she is a blessing and I learn from her daily to not give up. It has been a hard road with lots of ups and downs, but we would not have it any other way. I hope and pray one day there will be more testing and available information that’s easy to access for these babies, they deserve it!

Jennifer Harrison

Baby Lilly