Born of My Heart

by Brandi from the blog Born of My Heart.

Brandon and I (Brandi) tried to conceive for five years. Years of doctor appointments, infertility drugs, and negative preganancy tests were just too much to handle. We started praying about adoption. We began to look into agencies, and we became foster parents. The next two years flew by. We had two failed adoptions that were both heartbreaking, so we decided to put adoption on hold for a while.

That's when I read my email. A wonderful woman, whom we had worked with in adoption before, asked us to view the profile of a special needs little boy. We did. We saw his picture and fell in love in what we knew was our son. ~~~There is defiantly more to this story but that is another story in and of itself~~~

Joshua Matthew Lee became our son on September 17, 2009. He had a tragic little life and needed lots of love. Matthew (as we call him) was born on time, perfectly healthy! He went home to his first adoptive parents at two days old (my birthday) and was their miracle boy. At three months of age Matthew was not meeting his milestones. He was not making eye contact, had very little head control, and did not smile. An MRI then showed what would become the beginning of his diagnoses. Matthew has Agenesis of the Corpus Callosum, Agenesis of the Septum Pellucidum, Septo Optic Displaysia, Cortical Visual Impairment, Optic Nerve Hypoplasia, Epilepsy, Cerbral Palsy, Low Tone, Photophobia, Bilalteral Schizencephaly, and global developmental delays.



Matthew's first adoptive family did not feel they could parent a special needs child. After seven weeks in private foster care, we brought Matthew home. Our sweet boy is a miracle. We were told he would not smile socially~he laughs. We were told he would never make eye contact~~he tries. We were informed he would never be mobile~~we have video of him attempting to crawl. Matthew is now seventeen months old. He still has little head control. He has 100+ seizures daily even with two anti seizure meds and the Ketogenic diet. Developmentally he is still an infant. But labels have never been our "thing." We choose to see him for the beautiful, sweet, kind hearted boy who enjoys laughing while his sister cries. He will hold your hand and in doing so grab hold of your heart.

Little did we know, but eleven days after we brought Matthew home, his sister was born. Lillian Autumn Grace was born anywhere between 28-32 weeks gestation and addicted to cocaine. Her birthmom relinquished rights and Autumn (as we call her) was available for adoption. We knew about her, but were not in a position to adopt so soon. We prayed for her. She was a rockstar. She stayed just over six months in the NICU before finally being discharged in March. Autumn was born addicted to drugs and had failure to thrive. She was a measly 3 lbs 4 oz at birth. She had suffered a stroke to her spine in utero that has left her paraplegic. Her legs are "deformed" and her feet are clubbed. She has undergone three surgeries to correct the strictures that were in her intestines, and has sailed through them all.



In March our prayers were answered, and we knew Autumn was our daughter. We became a family of four in April 2010. Autumn is cognitively intact and is blossoming. She is still quite small for her age, but is crawling everywhere. She will not be able to correct the deformity in her legs or her clubbed feet and will never walk. She will not let that hold her back. Next week she turns a year old. We are constantly reminded at just how beautiful and fragile life is when looking at our blessed babies.



We never intended to adopt special needs children. All we knew was we were meant to be a mommy and a daddy. We now know that our children have taught us more than we ever knew possible.

Hope for Jude

Today's story is by an amazing mom, Jenn, of the blog Jude: The Diary of a Baby and a Stroke.


I am married to the love of my life, Mike. I have a daughter, Emily, who is ten from a prior marriage, and my son, Jude, who was born in September of 2008.

I was so excited to hear that we were going to have a baby! I thought of names, planned room ideas, and visioned a perfect baby in my arms. My first pregnancy was a breeze, but I worried over everything so with this pregnancy I was determined to be relaxed. I remember telling my husband I was going to "sit back and enjoy my pregnancy". I was in for a shock, because that is not how things went.

I had issues throughout my pregnancy, which was unusual, because my first pregnancy was fine. At three months I had an ovarian cyst rupture, I then developed hydronephrosis of the right kidney, I went into early labor at 31 weeks, etc. The big issue we had was at four months when I had my level two sonogram. I was convinced Jude was a girl, and that’s all we were focused on was finding out the sex. Little did we know we would find out more. We went into the level 2 sonogram, and the doctor was very nice guiding his way around the baby. He announced we were having a boy, and that everything looked great. Then he got very quiet, and I noticed he was scanning the brain….and my heart sank! I knew instantly there was a problem. My husband had lost five babies with his first wife due to ectopic pregnancies, and my mind immediately turned to him. Calmly but concerned I asked, "What is it?". The perinatologist replied, "Your baby's brain ventricles are slightly enlarged, it’s probably nothing at all, but I suggest a fetal MRI to rule out any issues". For some reason I knew at that moment something serious had happened. I scanned through my mind wondering if I had done anything wrong during my pregnancy. A few weeks later we completed the fetal MRI, and we were told that Jude suffered a bilateral brain bleed, or stroke. The doctor explained that she couldn’t tell us what the results would be, but that it didn’t look favorable. We were given the choice to terminate the pregnancy, and we struggled with this. We took the MRI to the neurologists at Cooks Childrens, and the head of radiology at Harris. The doctors were fabulous, and took their time answering any questions we had. This baby had been growing inside of me, and both my husband, and myself were very attached to him. Although, the idea of bringing an incapacitated child into the world seemed like it would be very cruel. The doctors explained that babies suffer strokes a lot in utero because their little vessels are "so friable". But the difference is most babies recover from this issue and Jude did not. The doctor explained that Jude’s brain could still compensate, and that his issues could range from mild dyslexia to profound retardation. We decided we could not terminate a pregnancy based on possible mild dyslexia, and we had to give our baby a chance. Even through the stroke he kept on fighting, so we had to fight for him!! Throughout the rest of the pregnancy the perinatologist was amazed as Jude’s head continued to grow on target, and we got our hopes up!

We gave him the name Jude because he is the patron saint of lost hope. He helps those that have no hope left find their way again. We thought the name was fitting.

During the pregnancy I cried a lot, and I started my blog....




Releasing my emotions in writing seemed to help me deal with this situation head on. My husband was also my rock, and he comforted me when no one else could.

Jude’s birth held great expectations because of the news we had been given. My husband, and my cousin Sarah were both in the room with me. Jude’s birth took about 12 hours, and he had a slight shoulder dystocia when he was born. There was panic in the room due to the shoulder issue, and I remember everyone yelling at me to push as hard as I could. I also remember the doctor yelling, "After everything you have been through this baby is NOT going to have issues from shoulder dystocia", and at that very moment she wiggled him free. We all held our breath waiting for Jude to cry, and then we heard him loud and clear. We all breathed a sigh of relief, and Jude scored a 9.9 on the apgar.



After his birth we took home what we thought was a happy, and healthy baby boy. At three months old Jude suddenly experienced a grand mal seizure. After that he began to have up to 8 seizures a day, and our dreams were crushed.

We went through an emotional roller coaster that never seemed to stop and let us off. We wrestled with our emotions, our lack of sleep due to Jude’s seizures, and constant hospital stays. We felt ripped off, and like we had been cheated, but realized we were given a blessing. Jude has inspired everyone in my family, and has taught my daughter compassion, and empathy. We wouldn’t trade him for the world!




Jude had a bilateral stroke in utero that caused a neuronal migrational disorder which caused bilateral closed lipped schizencephaly. Originally in the hospital we were told Jude had a long list of conditions, and were told he wouldn’t "walk, talk, and wouldn’t live past early childhood". We have since been told otherwise, and have compared the new neurologists findings to the MRI, and concur with the above listed condition. When I was told he wouldn’t live I was furious, and mad at everyone. I then turned my anger into a march specifically for Jude and to make sure that what I was being told was correct. I then found out it wasn’t, and that with treatment Jude could go far. What Jude accomplishes will be up to Jude! No one can tell me that he has an expiration label! I believe in being your child’s healthcare advocate.

We were instructed by a neurologist that Jude needed to be on phenobarbitol, when they didn’t work we tried topamax. When neither of those controlled the seizures we felt at a loss. The seizures became an everyday routine for us, and we knew Jude would never develop properly with them. We then picked a new neurologist who tried vitamin B6 that didn’t work, and then Depakote. The Depakote has been our saving grace!!!

I follow many bloggers that inspire me. Ellen at the Love that Max blog inspired me. I had talked to Liz Logelin in the just mommies forum, and followed her husband's blog when she passed away after giving birth. I figured if he could make it through something so terrible then I can surely make it through this. I still had my loved one, and would put everything I could into Jude’s future.

Jude is seizure free at the moment. He does have Cerebal Palsy that affects his upper torso more than his bottom. My husband had to quit his job, and the medical bills are outrageous, but we are very happy we have our little Jude. He is also smiling, and laughing which he never did while on the pheno! All we wanted was to see our baby Jude laugh......and now we can!



One the phenol Jude was like a little zombie that didn’t react to anything. After being weaned off Jude seems to have surfaced. He smiles at my voice, and loves to be held. He has the funniest little pterodactyl laugh.. You can see that Jude is determined to roll over, and that he really wants to crawl. He gets very frustrated at his limitations, but I believe this will help him prove the doctors wrong.




Our goal is to get Jude to walk someday. We understand he won’t ever be "normal", but who is really? We also put time aside for our family, and friends, and to always take time to listen to each other's emotions.



My advice to other parents is to do whatever research makes you feel better, and make sure you stand up for your child’s rights. The doctors are only doing what they think is best, but remember they are human and can be wrong. I had a hard time accepting help from other people, and someone gave me great advice regarding that. My aunt told me "Jennifer everyone feels helpless, and wants to do something. Let them give to you because it makes their hearts feel better". In addition, once you decide to proceed through the pregnancy, never look back and question anything. Also, never wonder if you did anything wrong, because you didn’t. I had a doctor tell me, "You are not a woman who abused your body with drugs like some women do, you just got the short end of the stick". It was brutal honesty, but that sentence has stayed with me. I have now become an advocate for pediatric stroke awarness, and for the March of Dimes. 1 in 4000 babies will suffer a stroke, that means you have a 6times greater chance of having a baby with stroke than many other childhood issues. They just don’t talk about it because there is little they can do once a stroke happens. Although we cannot avoid a stroke in utero, there is so much we can do to help our children live a stroke free life. Strokes are fast becoming one of the top ten killers in children. Be sure to learn all you can do to avoid this situation. Have your children exercise, eat well balanced healthy meals, and do not smoke around them!

For more information about pediatric strokes or stroke in utero, visit:

I am Pregnant: Babies Forum - Ventriculomegaly or
Pediatric Stroke Network