If you would like to help our family cover the costs of Matthew’s care, you can make donations here:
https://www.gofundme.com/miracle-matthewWhere to begin to tell this miracle story of Matthew’s? I feel like I could write an entire book. This has been a long difficult road filled with many sad tears, happy tears, big decisions, and everything in between. I’ll stick with a short version for now and write the entire story at another time.
During our 20 week ultrasound, which led to several others and a MRI quickly following, the doctors discovered that our baby was missing most of his/her brain. And instead of a brain, it was replaced with cerebral spinal fluid. The fluid was going to continue to expand the head of our baby. The head size was measuring about 3 weeks ahead of normal. We were told our baby wouldn’t live past several days, if not hours, or die before birth. The diagnosis given was semilobar holoprosencephaly, and the prognosis for these cases are very bleak. Essentially since half way through our pregnancy, we have been preparing to bury our precious little one, and spend as much time as possible with him or her as we could. While still pregnant, we tried to do as many memory-making things along the way like: baby’s first motorcycle ride, baby’s first vacation, and other fun things to fill our hearts with happiness instead of focusing purely on the sadness that would inevitably come.
Speeding this story up to week 37 with our last ultrasound on Friday, July 27 our perinatologist looked at the ultrasound and said that if we wanted any chance of a normal birth without c-section, we needed to get induced immediately. Baby’s head size has grown to 4-5 weeks ahead of schedule. We were admitted to Mercy without issue within a couple hours and began the birth and induction process.
After 2 full days of induction with nothing like our birth plan (more of that story to come later), we gave birth to Matthew James Corpstein at 11:21am, 7 pounds 14 oz, 21 inches. He was breathing and regulated his heartbeat on his own. We were told that these were things he would do, but the doctors weren’t sure he would be able to feed. We were told he likely wouldn’t see, hear, or feel pain.
After he was born, he was able to latch and nurse right away. He responded to lights, voices, and touch. These were things that he supposedly wouldn’t do. We decided to do a follow up MRI to determine if the original diagnosis was right. The results came back, and then suddenly we were talking with a pediatric neurosurgeon who said that he definitely DOES NOT have semilobar holoprosencephaly. That there is much more brain tissue than originally thought, and instead he has hydrocephalus.
This new diagnosis still means Matthew has extra fluid in his brain, but the difference is that the fluid is pushing the brain tissue to the side of the head, making it appear as if there’s no tissue, when in fact there is. The new MRI showed that they could see all or almost all of the front and right brain tissues, and most of the back side. The left side was difficult to tell because that area had the most fluid that was pushing into all the other sides of his brain. The neurosurgeon told us it’s possible he could lead a completely normal life. Many hydrocephalus babies live with no abnormalities. Many also have some developmental delays or disabilities.
We simply couldn’t believe what we were hearing! We had prepared for the last 4 to 5 months of not bringing a baby home, of using hospice and end of life care, and now suddenly Matthew’s chances of survival are high and having a fully functioning life could be possible! It’s like buying a lottery ticket and actually winning the jackpot! We were overjoyed, and I just still can’t put into words how we feel about the amazing news. We know God was protecting us and our beautiful baby boy, and we had put our faith in His hands, come whatever may.
So where are we now with all of this?Matthew needed to do emergency brain surgery to drain the fluid from his brain, which would allow his brain tissues to expand back. The surgery happened when he was just two days old, on Tuesday, July 31. This required putting a shunt in his brain, that would drain down into his abdomen. He will have this for the rest of his life, and likely will have other surgeries, tests, and MRIs down the road to make sure it is functioning properly as he grows. Surgery went well, and he is recovering like a champ. The neurology nurses told us this was a very severe case of hydrocephalus, but he is doing remarkably well.
A good friend called him Matthew The Great for being such a miracle, and that’s exactly what he is. He is our little miracle. A boy who wasn’t supposed to be born alive, much less do anything else, has showed us that God is protecting us and blessing us beyond anything we can imagine.
We ask for prayers and well wishes during Matthew’s initial healing in the NICU. He could be in NICU for two weeks to a month. If you wish to help in anyway, there is a part of this website that shows how you can help Drew and Ariann with transportation or keeping house during this time, while they navigate their new schedule around NICU visits.
No more NG (feeding) tube!
Look! I’m a bunny! 🐰
I get to watch my parents on the live national TV show, Fox & ...
My parents did a great job of educating about hydrocephalus and ...Patients and caregivers love hearing from you; add a comment to show your support.Help Matthew Stay Connected to Family and Friends