Our Little Miracle, and How Breastmilk is Saving Her Life
Jayden at 10 weeks. Blind and Deaf.Jayden was born cocaine and alcohol addicted, with congenital syphilis, at 31 weeks gestation. She had no skin on the palms of her hands or feet and had to have skin grafts. They could find no formula that Jayden could tolerate well, but settled on the one that she had the "least severe reaction to."
When she was about eight weeks old, she was assigned a foster parent, who came to do with her for eight days before she took her home. Jayden was completely blind and profoundly deaf, and would need to be accustomed to "mom's" smell and touch before they sent her home. When she went home, she was the most critical discharge they have ever had from that NICU, which routinely sees the sickest of babies. Basically, with tears in their eyes, the nurses sent Jayden home to die. Jayden was insulin dependant (with critically unstable blood sugars, typically either below 60 or above 400), on oxygen 24 hours a day, and set off her apnea monitor 6-10 times a day. In order to set off a monitor, she would have to not breathe for many seconds at a time. She had gained and lost the same three ounces since birth, and was no more than four and a half pounds.
Her foster mother asked over and over again of anybody who had authority why this baby couldn't be on breastmilk, shouldn't this baby be on breast milk, what did she have to do to get this baby on breastmilk? Over and over, she was basically told that this was a medicaid baby and that the state wouldn't PAY for banked milk (which costs a minimum of 4 dollars an ounce, and has been pasteurized) for a MEDICAID baby. Finally, one day, when Jayden was literally activly dying, an infectious disease doctor looked at her foster mom (who is a friend of mine because of foster work and doula work) and said, "I won't tell you NOT to give her breastmilk. We know that it would give her the best chance!" So, we got her some frozen breastmilk.
With her first bottle of human milk, Jayden's blood sugar regulated. She is typically somewhere around 120 now. Within the first three weeks, she regained her sight and hearing. Her new pediatrician says that when somebody is actively dying their brain will shut off all non-essential functions--and hearing and sight are non-essential functions. The first week on breastmilk she started to only set off her apnea monitor during the night's deepest sleep...and only then typically once a night. Within three weeks, they took it off of her completely, because she just didn't set it off any more. The first week she gained and KEPT ON four ounces. The next week three. The next week SEVEN. At this point, the new pediatrician put her arms around the Foster Mom's shoulders and said, "If you hadn't given that baby human milk when you did, she would be dead today. You are a hero." Eight weeks later she had gained nearly four pounds. When she was nearly nine and a half months old she was eleven and a half pounds! We now have full cooperation with her new pediatrician and the state to give her donated human milk, no questions asked.
After about six weeks on human milk.We have tried her on formula again, and on "extra calories" breastmilk boosters several times, to see what would happen should we run out of breastmilk. The baby immediately goes into crisis again. Formula is NOT okay. She is showing strong allergies to cow's milk proteins, soy proteins, and corn and corn derivatives, which pretty much eliminates every form of artificial milk we have available.
Through testing when she was about ten months old, we are sure that the syphilis is completely eradicated. The doctors thought that perhaps she was born without a pituitary gland, because she is so small (personally, since the child didn't gain and keep on an ounce until she was 3.5 mos old, and then had a TON of healing to do, the growth--or lack thereof-- always made sense to me). However, we have found out that she does indeed have a fully working pituitary gland...but is one of 18 people in the world right now who was born without a pancreas. This makes a little more sense, as she was not digesting as much of the milk as she could have been. She is working with an ND, and has started to have success with some of the allergies she has, especially to digestive enzymes (which she will need to take forever to properly digest her food). When we get her non-allergic to those, we will start to work on . At this point, they are so severe that the baby will not be able to start solids until she has been treated, as she gets deathly ill from anything that is not human milk, even now at 17 mos old. (She is now 17 pounds!!)
16 Months, and now she's pulling to standing and creeping. :)Jayden is now crawling, sitting herself up, standing in the middle of the room by herself, and creeping on objects! Since she was deaf for the first three and a half months of her life, her progress with making sounds is "age appropriate," and her ambulation is more than appropriate for her adjusted age, as well. She has gone from a baby on Death's Door, to a toddler who is working to be a normal child, whose only "disability" to speak of will be an insulin pump! But to keep her well, we need human milk. She cannot tolerate anything else yet. We know that this could be affected by the enzyme issues, but also have a strong suspicion that it has a lot to do with the drugs and infections that were in her system when she was born, and the damage done by the high fructose corn syrup and other inflammatory factors in the formula for the first months of her life on top of the other damage that was already there at birth.
The foster mom particiaptes in "milk share" which is an online community of pumpers who donate for the cost of supplies. However, if we can get donated milk from our immediate community, this would make life a lot simpler! We have drop points in in Troy , as well as in Livonia, Lake Orion, and if we could get a driver from Lansing to bring milk in the direction of Livonia, Lake Orion or Auburn Hills, we could have a drop point in Lansing as well. We have donations of bottles from evenflo and ameda, so if you want to pump but cannot afford to supply bags, we have bottles to use instead (and that will keep the used bags out of the landfill, as well!). If you have the ability to spend the money, you could also buy evenflo bottles to use (please mark your bottles with masking tape, with your initials, your drop point, and the date pumped).
Jayden cannot tolerate homemade formulas made of goat milk or other kinds of human milk substitutes.
Please, if you or somebody you know who is breastfeeding would be willing to continue to save a baby's life, she, her foster mother, the family who has agreed to adopt her and all the people who have come to love Jayden would be eternally grateful!
Please go to the web page set up for donations of breastmilk for Jayden